# Undiagnosed Kids



## Crohn's Mom

I thought it may be a good idea to start a thread for the undiagnosed kids out there 
the one for the adults seems to be quite informative, so maybe this one could help the parents out ??

As of right now, long story short, I have two sons (Austin age 16, and JJ age 13) who are both showing symptoms and currently undiagnosed.

Both of them are presenting differently, but they do have a lot of similar symptoms as well.

Austin's has come on quickly and out of the blue about 3 weeks ago.
It started with a jelly fish sting that I am guessing sent whatever was hiding in his system into over drive.
low grade fevers
LRQ pain
stomach pain after eating
extreme fatique
cough
loss of appetite
small weight loss (around 6-7 pounds so far)
history of mouth ulcers
intermittent diarrhea 
some vomiting (minimal)

Austin also has a history of "allergic colitis" at birth due to milk and soy allergy that caused a lot of bleeding and mucous and failure to thrive.  He had 2 colonoscopies before 6 months old that showed little tears (holes) throughout his intestines.  He was treated with prednisone and put on a special formula until he was around 1.

I took him for blood tests already and so far what is showing is that his  Mononucleosis is re-activated (he had a severe case when he was 4 that lasted around 6 months)
He went for his first GI visit this morning, and (thankfully??) his older sister has paved the way for him so things are moving rather quickly.
He is scheduled for an Upper GI and SBFT next Tuesday morning. ( they wanted to do it this coming week, but it is times for finals at high school so he can not miss any days) 
He also has to do 4 separate stool sample tests which are looking for :
white cells
C. Diff
Blood
H. pylori (blood test was already negative for this)
O&P x3 ( ?? I have no idea what this is LOL)
C&S (?? or this one )
And also he will have an abdominal ultrasound on the same day as the Upper GI & SBFT

Doc also said after these results are in she will schedule an upper endoscopy and a colonoscopy.
There is a specific blood test to test for CD but she said at this stage it would be pointless to do because  we still wouldn't know how to treat him even if it tests positive; that and it's not always reliable.  (Gabrielle's was negative the first time they tested her~and look how that turned out!) 

As for JJ:
His symptoms really started around last July 4th.  He had an emergency appendectomy and the same "tummy ache" he had before the surgery is still there.
It has been progressively getting worse over the months.
He also has LRQ stomach pains, along with pains up in his right rib cage.
Heartburn
chronic (croupy) cough ( for 5 years)
constipation
diarrhea 
intermittent low grade fevers
eczema (on his eyes that causes cracking and bleeding)
finger and toe nail "issues"
a strange sore on his lower right leg that hasn't healed in 10 months
fatigue (getting worse ... he slept 13 hours the other day and has been taking naps)
delayed puberty
and very short compared to his peers

He had blood work done in November of 2010 which looked "ok"
and again this past week that didn't look so good.
His pediatrician actually said that his blood work is definitely pointing towards CD, but also possibly Celiac's Disease as well.
JJ goes to see the ped GI on this coming Wednesday so I am assuming the course of testing will be very similar to Austins.


OH what a fun summer we're going to have in our home ! :ylol2::ylol2:

So whats everyone's story of how they are dealing with getting their kids diagnosed? OR already did? 
Did you have similar tests done right away? Or did the doctor try and tell you they have a "flu" or "Chronic Mono" or whatever else ?
Do the doctors often make you feel like your an over reacting parent ? They sure do to me a lot! Although, I will give them credit for this last couple of weeks...they are paying attention this time around and not pushing me away.  I will say their pediatrician was hesitant with Austin though and still trying to convince me it's just "mono" again ~ problem is...that's exactly how this started with Gabrielle!  We spent 8 months going from doctor to doctor and them saying the same thing.  I'm not willing to accept that diagnosis again for another child !


----------



## dannysmom

Hi Tracey!
I am glad you started this! I was thinking of it the other day and was thrilled to see it! I am glad you are getting more attention for your sons. You would think that with a sister with Crohn's you would not need to push.

I do not know what some of those stool tests are, but will try and research them. Danny has had very limited stool studies done. His story is on the link in my signature. He has been sick for about 2.5 years now and I feel like we are right back at square one ... but exhausted a lot of doctors. I have 3 children too. (Rob 18, Heather 17, Danny 14). Rob has other health problems too. It is not easy have sick children!


----------



## Dexky

Hey Jeanne, how's Danny doing now?  Is there still no definite dx? CF or crohns?


----------



## Crohn's Mom

Hi Jeanne 

I just read your story, and wow your son has really been put through it ! So sorry 

I"m wondering the same as Dex...are you any closer to a diagnosis?

Your story reminded me of when JJ's cough first started about 5 years ago, that's one of the first things we had to do was to get him the sweat test for CF.  Scared the crap out of me quite frankly! It did come back negative, although he still has that weird cough to this day.  Maybe after all of his testing we will finally have an answer to his cough at least.

Can't wait to hear an update from you!


----------



## DustyKat

Sarah went undiagnosed for about 18 months and this is her story:

Sarah didn't have all the normal tests during lead up to her surgery, she has never had a colonoscopy, pill cam or endoscopy. I think her age coupled with her symptoms never lead anyone to believe she had IBD. Her symptoms only became regular about 6 months out from diagnosis and frequent within about 2 months and by frequent I mean about once a week. She never had diarrhoea or bleeding and all her pain was literally around her stomach coupled most of the time with vomiting, headaches and sore eyes. This lead her diagnosis of Abdominal Migraine. She did have weight loss. Right up until the night before surgery all her blood results returned normal, except when they did pancreatic enzymes, including CRP and ESR, stool specimens were normal, urine specimens normal. 

About 10 days before surgery she had a fall at school about 2 days later her pain changed to her right kidney region and down her back. It became extreme and we took her to the doctor and he ordered an ultrasound of her kidney. Of course everyone thought it was related to the fall even though she didn't hurt herself at the time. The ultrasound indicated she may have a PUJ obstruction because the pelvis of the kidney was so swollen, it also showed fluid in the pouch of douglas that they put down to a burst ovarian follicle when I asked about it. That was followed up by a nuclear scan which showed slowing in the emptying of the kidney but no structural abnormalities. That night her pain became extreme generalised abdo pain and the doctor came during the night and gave her morphine and in the morning we took her to hospital.

They couldn't find anything obvious so the casualty doc did pancreatic enzymes, just on spec, and they returned a very high reading and they thought they had hit the nail on the head and admitted her for Pancreatitis. The next day those levels were back to normal again. She was kept on NBM and morphine and things seemed to settle again and she was sent for a CT scan with IV and barium contrast and that came back completely normal so she was discharged. Within a day the pain was back and over the next four days along with the pain she developed vomiting and a fever so back to the hospital and this time the bloods showed she was septic. They took her to theatre thinking they would do an appendectomy and laparotomy but when they opened her up her bowel was perforated and infarcted and in the surgeons words, it was an absolute mess with pus everywhere. So she ended up with a Right Hemicolectomy, removing 59cms of small bowel and 9cms of large bowel. The surgeon told me when he spoke to me in recovery that it was Crohns. 

Obviously the fluid in the pouch of douglas was pus all along. I don't know if her high pain threshold masked symptoms but I really think it did, she just didn't present as ill as she really was. The whole time pre op her pain was never above 7, she just didn't complain and I know part of it was she didn't want to be a bother. It breaks my heart to think back on it. 

As to the normal test results, well they couldn't explain that but the one that really stumped them and they couldn't get a handle on was the CT scan. They could not believe that it was normal and within a week they opened her up and saw what they did. I guess the only explanation is they weren't able to fully visualise the terminal ileum. It wasn't until the day before she went into hospital the second time that a distant relation rang and told me she had Crohns and it took them 4 years to diagnose her. I started to google and things fell into place. At least when I saw the surgeon and paediatrician the next day I was armed with enough info to say to them - she is not leaving until you prove to me it isn't Crohns!

Matt on the other hand was diagnosed super quick...Sarah's legacy...

One week of a couple of random vomits and feeling nauseous. I then asked the GP to do bloods for inflammatory markers, CRP was raised. The bloods were repeated the following week and CRP was higher. The GP could feel a mass in the RLQ so sent him for an urgent ultrasound. It showed free fluid in the abdomen but nothing of great note. In the meantime the GP rang Sarah's GI and he asked for the ultrasound to be repeated, it showed thickening of the terminal ileum. The GP arranged with the GI for an urgent colonoscopy and endoscopy and following the procedure the GI called me in and told me had Crohns. He went a CT Entrerogram the next day to confirm the extent of the disease. From the time of the first blood test to diagnosis was 2 weeks. 

Dusty. :Karl:


----------



## Dexky

Every time I read Sarah's story I'm amazed and frankly a little frightened by it!  What may be going on w/o notice scares the s%&t out of me!


----------



## Crohn's Mom

Ditto Dex !

Thanks for sharing again Dusty, I know how hard that is for you to relive it :Karl:


----------



## radchic

Tracey,  Lucas had eczema on his eyelid causing cracking and bleeding, and delayed puberty, and smallest in class.  He switched back and forth from constipation/diarrhea and has had on and off low grade fevers since he was 1.5 years old.  Weird how similar the symptoms are to JJ's.  O&v is ova and parasites.  Bugs and eggs.  C&S is culture and sensitivity.  If its bacteria, what antibiotic will work best on it.  So sorry about your boys but hope you get answers soon.  Dusty, you are amazing and strong.  What more can I say.


----------



## Crohn's Mom

Wow Rachel!

I'm going to have to tell JJ about this! We have never known anyone else to have the eczema on the eyes like him!
And yes, it is very strange that the symptoms are so very similar :eek2:
I've been telling the poor kid for years...don't worry sweetie you WILL grow some day...I promise !:lol:

Thank you for that information too...makes sense now!


----------



## dannysmom

Thanks Mark and Tracy for asking about Danny. And Dusty - thank you too for sharing so much!

We are pretty much done with the CF testing now. It took a little over 3 months to complete and 2 CF Centers agree he does not have CF. Full gene testing for CFTR did not show any known mutations, just a mild variation. We even went to Johns Hopkins for a nasal potential difference which came back basically normal. The dx of CF came with mixed feelings ... as did the reversal. So we do not know why he had 4 positive sweat tests. We had some endocrine testing done (looking for Addison's disease) but the endo thinks he looks fine. I tried to push for more comprehensive tests since his aldosterone was low, but she would not order them. A bronchoscopy showed inflammation and mucus in his lungs; he did not culture bacteria (good) but did culture Candida Albicans. Last fall Danny tried cipro/flagyl for about 2 months and then vancomycin for another 2 months. The coughing up bloody mucus started about 2 weeks into the vancomycin.  I am thinking that the antibiotics may have created a situation where the Candida got out of control. Danny has had diarrhea daily since January (and 2-3 times each night). He also has had a headache since October. 

Our main GI (at Columbia) told us when we first met that he thought Danny had something beyond what current medical practice can dx and thought we needed to think out of the box. We've had 2 other GI opinions (last one at Johns Hopkins) and they both thought Danny should have his colonoscopy repeated to biopsy his ileum. They did not think the mild inflammation found in his first colonoscopy was significant enough to match Danny's level of debilitation. Thye also say that if they do not dx Crohn's, then they would likely dx IBS and recommend cognative therapy to get Danny functioning better.

I really do not think cognative therapy is enough to get my son feeling better again. He has always been a very active, funny, totally-not-shy kid. He loved school - got all A's. 

I am not sure what we are going to do next. Our next GI appointment is June 7.
Sorry for the ramble!
It is really nice to have other parents to talk to!


----------



## DustyKat

Oh Jeanne, what a tough time for you and your little guy...:hug:

Interesting about the Candida Albicans as many here attest to this infection having an affect on their Crohns, whether as a proposed cause or creating problems once diagnosed. 

I don't disagree with the doc saying to think outside box but with so many here facing and having faced such lengthy diagnostic periods you may not have to look that far out of the box. I think most people that don't present with classic symptoms, and with normal blood results, particularly in children, being not uncommon either so many fall through the cracks. He may well be right but I think far more extensive testing needs to be done. 

I agree with the colonoscopy being repeated but it will only be of use if the inflammation is where it can be visualised by a scope. I would also push for ultrasound and some sort of imaging to be done...CT/MRI Scan or Enterography and if need be and it is safe a pill cam. If there are any structural changes at all...thickening, narrowing, etc...do not accept the diagnosis of IBS alone, IBS does not cause structural changes. IBS and IBD can co exist but IBD is the one that causes the structural change. 

I don't need to tell you that this disease can be a nightmare when it comes to solid answers. Matt has just had surgery and his path report with all the tell tale visual signs of Crohns still said there wasn't convincing evidence for it! I think it was the absence of granuloma's but hey not everyone has those either. 

You know your son better than any doctor and if you aren't satisfied with the one you dealing with then seek a second, third, fourth or how ever many it takes opinions until you have the answers you need. 

Good luck with your appointment on the 7th June and please keep us posted on how you are both doing. I hope Danny finds answers and relief soon!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## billyjoel

I really feel for kids who have crohn's and UC...  I knew a kid years ago in my church youth group who had it bad and had surgery like at 13 or 14.  He had problems for years prior to that.  I know how scary IBD can be for adults, can you imagine for a child?  One good thing is that you are knowledgeable about the disease so if they do have it diagnosis will likely be less complicated.  I wish the best for everyone that has a child with IBD!

Is there a thread or could you research information on how to help a child psychologically who may have IBD?  It might be a good addition as well, think about the things they have to put up with at school, etc.


----------



## Crohn's Mom

What a great idea billyjoel! 

And I here by nominate our famous Dusty to start it !!:rof:

All in favor ??

Ay!:kiss:


----------



## billyjoel

Somebody just got volunTOLD!!!!  Hahaha!


----------



## Dexky

And of course, that's just what Dusty did!!

Thanks Jeanne!  I know you're feeling so tied up without a solid dx!  Good luck on the 7th!!  Let us know!!


----------



## DustyKat

Well, thank you billy! NOT!, 'cause I sure did get volunTOLD! :wink: :lol:

And as for you T, well, you'll get your comeuppance! :rof:

Dusty.


----------



## Crohn's Mom

Here come the fevers with Austin...99.9 today; and JJ's stomach ache/pain is becoming a non stop issue  ... here we go 
So glad I went ahead and started getting them into doctors sooner than later !


Dusty...I'm shaking ! :hallo3::hallo3::lol2::lol2:


----------



## billyjoel

Tracy, sorry to here that 

Just do your best to stay positive and upbeat because your attitude can affect their attitude and they will better manage if they stay upbeat


----------



## Crohn's Mom

Thanks Billy !  I am an overly positive person actually.  
Yes, we all have moments, but mine are rarely ever a visible to my children or anyone.

The shaking comment was for the


> And as for you T, well, you'll get your comeuppance!


from Dusty LOL :ylol2:


----------



## DustyKat

> Dusty...I'm shaking !


As you should be!!! :ylol:

Oh man T, it doesn't rain, it bloody pours!...boo!

Kudos to you Mum for jumping on things quick, be sure and give the docs a run for their money mate. I so hope that things settle for your two guys and soon T...:hug:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

I took Gab for her yearly physical today and decided to question the doc on a few other things while I was there.  As I said yesterday, Austin is running fevers of 99-100 F.  He is still running fever today and came home from school today and said that he basically slept through a couple of his classes and "just doesn't feel good".  So I asked the doc if this was typical if indeed his problem was "just" the Mono reactivated.  I explained that he is getting a little worse each day, and we are in process of having numerous GI tests done, but should I be worried? Do I need to have him evaluated again sooner? Before the tests are done ? 
 He then tells me that "we just don't know that much about Chronic Mono yet to be able to answer that question." WHAT ?!!?  How can a doctor "diagnose" chronic Mono, and then a few days later tell me he just doesn't know ??
This just unfortunately leads me to believe that my first instincts are going to be right after all....this isn't Mono attacking my son AGAIN....it's Crohn's ! 
Am I jumping the gun? Maybe.

On another note, tomorrow morning is JJ's very first appointment with the pediatric GI.  I am very interested to see what course of action she will take with him since his symptoms are so different from his brothers.

We're hanging in there tho! :tongue:


----------



## DustyKat

Argh!!! Bloody docs! Talk about do ya head in T. 

Are you jumping the gun! No! No false starts as far as I'm concerned. You have too much history and too much experience on your side T to ever worry about that. Anyway, after all that Gabs has been through who gives a toss about jumping guns! :lol:. I said the same thing about Matt...I'm probably over reacting. I had a lot less to go on T and I sure as hell hope you don't have to live through this with one of your boys, let alone two, but you are doing what you are because you don't want a repeat of Gabs. Who in their right mind could deny you the right to put your mind at ease and in worst case scenario at least confirm your fears and move onto a treatment plan pronto.

Good with JJ's appointment hun. I am thinking of you, as always. Let us know how your boys are when you get the chance...:hug:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

OK T, it is possible for parents to overreact (kid's sports comes to mind)!  I don't think you could be too cautious when it comes to your kids' health!!  No one can fault you for that!


----------



## dannysmom

Dexky - lol - overreacting to kid's sports brings back memories! 
Tracey - I would also ask that Crohn's be tested - he may very well have mono again (the IG blood tests did show activity again, right?) - but he may have something else too. Good luck with your testing!
Dusty - Thanks for all the new threads. I read about Matt's biopsies and could not believe what I was reading in your thread!!  Danny had a pillcam last summer. The first one stayed in his stomach the entire 8 hours. A subsequent gastric empy study was completely normal. Then he had one endoscopically placed in his duodendum which saw something that could be a crohn's lesion or could be debris.  If I had known debris could make results harder to interpret, I would have encouraged more cleansing. Danny was told only to not eat for 10 hours. I will ask about sonograms and MRIs again. Thanks


----------



## Crohn's Mom

> Tracey - I would also ask that Crohn's be tested - he may very well have mono again (the IG blood tests did show activity again, right?) - but he may have something else too. Good luck with your testing!


Yes, his blood test definitely show reactivation again.  However, this is exactly what happened to Gabrielle.  We went from doctor to doctor for 8 months because they kept saying it's "just Mono", yet she continued to get sicker.  So knowing that Austin had a severe case of Mono already when he was 4, that lasted nearly 6 months, I have a really hard time believing that it's "just Mono" with him.  Understandable considering our family history...at least I think so LOL.

We just finished with JJ's first visit.
He is already scheduled for a upper endoscopy and a colonoscopy for Wednesday next week.  So looks like I'll get to add another funny "horror" story to the other thread! :ylol:
She took a look at his nails and the weird patch on his knee, and seems to think he has psoriasis, which she also said has a tendency to go hand and hand with IBD.  So, she's happy that I already have an appointment with the dermatologist scheduled, and she's interested to see what he has to say.

Dusty...I thought you may find this amusing (or not)....When JJ was telling her about his stomach aches and headaches she say's....you know it could just be Abdominal Migraines ! Of course the first thing I thought of was Roo ! :ybatty:

Anyhow, we are on our way to finding out one way or the other what is up with the little guy.  And oh yeah...I almost forgot ... he is only a little under the 25% in height for his age group.  I knew it wasn't my imagination that nick named him "midget". :ylol:

Hope everyones having a great day! :ghug:


----------



## Crohn's Mom

I almost forgot...

the doc was going over JJ's blood tests and said she's pretty positive that he does not have Celiacs Disease.  Then she said "Did you know there is research being done now that is saying that Celiacs is being classified as IBD??"

Interesting...

Has anyone else heard this ? Or seen articles or research ?


----------



## AZMOM

T - I'm glad you went.  Lots and lots of prayers.......sigh.  I want nothing but good news for your family!

But, like me, I can tell you can deal with anything if you have a diagnosis and plan.

Big Love, (Not the TV show lol)

J.


----------



## Crohn's Mom

J ~ That's exactly how I feel!
It is very calming to me to know that there is at least a plan for diagnosis in place for both of the boys right now.  The doctors are listening, and moving very quickly.  I am so grateful for that. 

Big Love right back to ya ! (and I used to like that show! LOL)


----------



## DustyKat

Noooooooooooo, not Abdominal Migraine! :lol: 

It's great to hear that things are getting done pronto for JJ, even if it does mean the old silver stallion! Yikes! 

Holy cow T, you have so much going on with your kids your head must be fair spinning! 

Sending you and your kiddos all the luck in the world buddy...:hug::hug::hug:
Dusty. xxxxxxxx


----------



## DustyKat

Crohn's Mom said:


> I almost forgot...
> 
> the doc was going over JJ's blood tests and said she's pretty positive that he does not have Celiacs Disease.  Then she said "Did you know there is research being done now that is saying that Celiacs is being classified as IBD??"
> 
> Interesting...
> 
> Has anyone else heard this ? Or seen articles or research ?


I haven't heard of it being classified as IBD. I know that they classify it as an autoimmune disorder and I have read a few articles that all seem to refer back to the one study. The study, as far as I can ascertain, concludes that if you have Coeliac Disease you have a ten fold chance of having IBD as well. On the other hand, if You have IBD your chance of developing Coeliac Disease is no different to people that don't have IBD. Don't quote me on this 'cause I may have it all arse about!

Dusty.


----------



## Dexky

Good luck T!  And I hope, for JJ's sake, you have absolutely nothing to add to your prep thread!


----------



## DustyKat

> Dusty - Thanks for all the new threads. I read about Matt's biopsies and could not believe what I was reading in your thread!! Danny had a pillcam last summer. The first one stayed in his stomach the entire 8 hours. A subsequent gastric empy study was completely normal. Then he had one endoscopically placed in his duodendum which saw something that could be a crohn's lesion or could be debris. If I had known debris could make results harder to interpret, I would have encouraged more cleansing. Danny was told only to not eat for 10 hours. I will ask about sonograms and MRIs again. Thanks


Good luck Jeanne and keep us posted on how things are progressing. 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## MomofIBD's

Big Big Big HUGS MOM! It is so hard with so much that you are going through! Soon, Soon, I hope all is known so you can have your answers! One of these days I will write about my boys. It might be a book though! Sheesh! I am sure you all feel like that with what has gone on & with what continues to go on!

                 :ghug:   :ghug:   :ghug:   

                           :rosette2:           :Karl:      :rosette2:


----------



## Crohn's Mom

thanks Julz ~

I would love to hear your boys' story someday! (if you ever find the time)!

I'm just now getting a taste of what it may be like for you, but at least after the first one, we have a good idea of what to expect with the others and aren't as "scared". 
Well, maybe it's we're just not as scared for the same length of time :lol:
I don't know how you do it, and with you also not feeling good on top of it ! Geez! Supermom award for you !:ghug::ghug:


----------



## Crohn's Mom

Ugghhh, I wish JJ had some kind of treatment for something already. 
Poor kid has barely eaten in 3 days and his tummy is just hurting all the time.

He started his prep for the colonoscopy on Wednesday tonight ( our doctor starts prepping them about 5 days in advance, a little at a time).
He drank his Miralax down like a champ!
Hopefully we will have some sort of answer on Wednesday cause I really can't stand to see him suffer and there's nothing I can do 

Any suggestions on what I can do for him in the mean time ?


Edit: I was wrong, o so wrong Dusty...about the putting JJ to the side burner for a bit.  I hate to admit when I'm wrong LOL


----------



## DustyKat

Awww, poor little love...:hug:

5 days! I know it's not the full deal but, yuck! :eek2:. I hope he's getting something good at the end of it...:lol:

I don't know what to suggest T. Maybe pop him onto liquids like Ensure? But then again I guess he will soon be on some sort of dietary restriction for the colonoscopy. 

Oh T, you weren't wrong, just trying to juggle your kids and dealing with the most urgent issues as they arise...:hug:

Much love mate, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

UMMM....at the end ?? You're kidding right ??  
OH dear...we activated my old iPhone for him today in advance ! :rof:
He is one happy camper about it since he has been begging for about a year !


----------



## DustyKat

Me kidding? Using puns? Never! :wink:

Oh no, the pressure's on now T! He already has the iphone...now what? :ylol:

Dusty.


----------



## Dexky

Whoa, a five day prep!!  Is his diet restricted during this period?  Sounds extreme!!  Hell with a cell phone, I'd ask for a Mustang convertible!!


----------



## dannysmom

Hi T. My daughter loves her iphone. We have not found anything to make Danny feel better - so distraction works best for him. For Danny it is video games or movies ... but I am sure an iphone works too!


----------



## Crohn's Mom

Thanks Jeanne 
He is loving it ! He likes his video games, but he is much more of an out doors kid who wants to be playing basketball and football at all times.  Lately, he's been inside a lot due to not feeling good so momma's soft heart just couldn't resist surprising him :ylol2:

Dex, yes a 5 day prep, but honestly, it's so much easier on them.  There are no diet restrictions until the day before the test.  He only has to drink 1cap Miralax mixed with gatorade, or whatever, per day until then.  It helps in getting their body ready, and there's not much cramping on the actual prep day.  Gabrielle has done it this way several times and also the 'adult" way, and she will choose the 5 day prep any day !


Ahhh..Dusty....ummmm, I didn't think that far ahead ! :rof::rof:


----------



## MomofIBD's

Well here goes.....Not sure where to begin? I will start with my oldest John. I asked him yesterday when he started having pain or symptoms & he said in Middle School. But I never knew anything till he almost graduated! On my husbands side of the family they always dubbed the stomach troubles as the "Theiss" stomach. You eat something then you run to the bathroom 20 minutes later. So apparently John thought he had that too like his Father & many of his Aunts & Uncles do.  NO ONE has ever been diagnosed with any IBD's on either side of my or my DH's (= dear hubby) family. Only the end of his senior year in high school did he really start to complain to us about having pain & problems. But as a male & not wanting to really get into such a sensitive issue he still didn't push the issue too much & also realized if he cut certain foods out he could cut back on the bathroom trips. We finally mentioned it to his peds Dr. who sent him for all the usual first workup of blood & stool tests. Not sure of the exact time line in the very beginning. But I know by the time he was finished with his first year of college he was seeing a GI Dr. who wanted scopes & an upper GI & small bowel series done. Fast forward through the summer & not wanting to take off work because he needed the money for college. He started his second year of college having more issues & still no tests done. September & October the low grade fevers started. Constant pain & more Big "D". He would go to a little 2 bit hospital ER near his college. The first time or 2 they just did some tests & blew it off. I don't remember what they prescribed if anything but they would send him home. The next to the last ER visit they thought he had appendicitis but they were not sure. They wanted to go in & do Emergency exploratory abdominal surgery! That's when I said WOAAAAAAAA! Hold on a minute & called his regular peds Dr. & asked for advise. I gave him all the info of blood work & film results that the ER Dr. from this little 2 bit hospital in the middle of no where told me over the phone. 4 hours away from where we lived. Nothing pointed to a definite appendicitis! The peds Dr. said if it was his Son he would send him to a level 3 hospital like Hershey or Hopkins! So that's what we did.  Needless to say the Dr. at the 2 bit hospital was not happy!  But right after John was sent to Hershey by Ambulance this Dr. called me back & told me he had another Dr. look at the tests & confer with him. They thought that he might have Crohn's so started him on IV steriods & something to make him comfortable before they sent him on his 3 + hour trip to Hershey.  That was the first time we ever heard of Crohn's. He spent 4 days in Hershey with no DX. The colonoscopy could not be completed as his bowel was so inflamed they were afraid they would perforate it. He started to feel better on the steroids & went to see his hometown GI Dr. who sent him for the upper GI small bowel testing the day before Thanksgiving. He went back to College the following Monday & the next morning he called crying in awful pain, "D" , & fever. I called his GI right away & he said go back to Hershey as his test's were negative & showed NO CD! My DH picked him up at college & drove him to Hershey ER where they did a MRI or CT? & found 2 abscesses. One over his bladder & one over his whole appendix area. The next morning they did emergency surgery thinking he had a burst appendix as they could not find his appendix on any of the tests. When they opened him up they found a perfectly pink & healthy appendix tucked under a mess of diseased infected small & large intestine. They took out 7 in. of his large & small intestine along with the appendix & the ileocecum value (spelling sorry). The Dr's still did not know what they were dealing with. Until they got the biopsy back 5 days later positive for Crohn's. The Surgeons said it did not look like Crohn's. He is not symptom free today & has had a small flare but he knows how to control it with his meds & diet. He is taking asecol (SP) & something to help solidify things as his cecum valve is gone. 
Sorry so long...To this day I still feel so bad about not realizing all this was going on with him. 11 years ago my DH with our 2 middle son's was in a head on collision & our van rolled on it's side down a 10 foot hill. My DH has had to have 5 major back surgeries. It's been a lot of struggles but he is OK. A lot of constant pain. I am thankful I have my 2 boys & my Husband! It could have been a  whole lot worse.  It's not an excuse but an explanation of my crazy life!

Now on to Mike the second oldest. He had a lot of the same symptoms as John but tended to be more constipated at times. He started having problems in High School too. I don't think as early as his brother John though. He was DX with Neuro Cardiogenic Hypotension in High School (10th grade). He didn't complain much until his Senior year or after of stomach pain. Almost the same time line as his brother John. Same stubbornness for getting testing done too. He was is Philly going to College & had been in the ER several times for pain. The one time they did a CT they found a pocket of fluid around his appendix area. They thought it was Meakles Diverticulitis. But later testing proved that wrong. Was hospitalized for Constipation. The last time to the ER in his second year of college he had all the classic symptoms of Appendicitis but as we could not go to be with him because my MIL was dieing at the same time. ( Another Crazy Time ) He had a girlfriend with him the whole time. But again the appendix was perfectly pink & healthy. He left the hospital later than a normal appy because he had such bad pain. Also they found "Straw colored fluid". The Dr's never did say What or Why! I will say that my son got jerked around at that hospital & ended up fighting with the Dr's. After that fiasco he finally got all the scopes he was to get done & he was DX with IBS. The GI put him on Pentasas as he still ? .  Mike didn't like how he felt on it & now just watches his diet closely. But still is having a issues & pain. He has a lot of stress with college & trying to work his way getting himself through. I still wonder if someday down the road his DX will change. As I think his GI Dr. does too.

Now to Daniel....for a few years he has had that issue of having pain & running to the bathroom after eating something. This was getting worse & more frequent. It would come & go always at the back of my mind if he would end up like his brother John. Last summer he started getting blood in his stool not a lot but a red flag. When we went to his Peds Dr. for a check up we told him what had been going on.  He set us up right away with a Dr. in Hershey with a Peds GI specialist. Because of his brothers history. We met a month later with the Peds GI. Who wanted him scoped both ways eventually because of his brothers history also. But first wanted to try the Mirolax to soften things up as it might be causing the bleeding. His reasoning is that sometime there is hard stool at the beginning of a "D" bout that can cause cuts that would bleed. Well that threw him for a tailspin. So we set up the testing & then more things started to happen. His blood tests were elevated but not real bad. His Liver Enzyme GGTP was up slightly but all other liver enzymes were normal. Then he started having issues with his bottom. Graphic here.....He got a large pimple right next to his anus touching it. The Peds Dr. thought it might be an abscess so started him on Bactrum which caused MEGA "D" & nausea. (The Peds. GI likes to use the hometown Peds Dr. to check Daniel out when something comes up then he will see him ASAP or in the ER if needed at Hershey) Like an Evaluation person to out rule any childhood illness & not CD related too! Finally we got Daniel into have his scopes & right away he was DX with CD. The biopsy backed it up a week later. The first 2 months after DX that GGTP liver enzyme continued to go up slowly. But finally came back down to normal along with all the other blood work. As there was just a slight rise in his CRP & SAID rate. 

Looking back over my childrens health issues since birth. They all were very sickly with ear infections & sore throat infections. They all had their tonsils & adenoids removed at very young ages plus PE tubes place in their ears. Daniel has had mouth sores & continues to. Never made that connection till recently. Also Daniel had a reaction to an antibiotic at age 4-5 & had Serum Sickness. He ran fevers to 105 + up & down through out the day & night for a month or more. When the fever was up he would cry out in horrible pain & could not use his arms & legs as it hurt too much. He also had 2 or 3 rashes going on at the same time. Hives, BIG HUGE strange amoeba looking rash, & reddness around his joints.


----------



## Crohn's Mom

I'm a bit out of sorts today...
I am grateful that I have learned to never ignore my instincts; however, I just want them to be wrong today!

Austin had his upper GI and SBFT this morning, along with his abdominal ultra sound.
You know it's never good when you don't have to wait for the results , and the radiologist comes to find you. 

Austin has what appears to be a stricture and cobblestonning appearance in his terminal ileum.  He also has inflammation in the lining of his stomach.
The radiologist of course can not "diagnose" a patient, but he straight up told me it is VERY SUSPICIOUS OF CD, and he needs to be scoped at both ends a.s.a.p.
He said he will call our pediatric GI today and report this.

Austin is in complete denial and says he refuses to get a diagnosis and treatment because this will stop his dream of going in to the military.   Oh ugghh. 
I know he'll come around.  Poor kid.

JJ has his colonoscopy and upper endoscopy tomorrow morning at 6 a.m.
I have a feeling it will be more of the same news for him too.

I think I'm going to go live in denial land with my son for the rest of the day....He seems to like it there...his music is absolutely blaring from his room :tongue:


----------



## MomofIBD's

((((((((((((((((((((((((((((T))))))))))))))))))))))))))))
Oh sweetie I know this is so hard! Denial away! Whatever you need to do! I am with you!:Karl::hug:


----------



## Crohn's Mom

Thanks so much Julz ! 
I'm dreading tomorrow and barely acknowledging today :ybatty:
what are ya gonna do right !

And I appreciate you taking the time to write out your story on your boys.
What a rough road you have traveled ..
You're one strong momma ! :ghug:


xoxo
~T~


----------



## DustyKat

@Julz, thanks hun for putting all that into words and it sure one helluva ride that you have had! You are doing a fab job and you should be proud of yourself 'cause I'm sure in awe of you! :awe:

@T, Man oh man mate, where does it all end??? Poor Austin, and made all the harder with seeing what his sister is going through. I don't blame you both for wanting to run away or jump into bed and pull the covers over your head! Then JJ, I hope all goes well with the scopes, I will have you and your kiddos in my thoughts hun, as always. 

Loads a love, :wub:
Dusty. xxxxxxxx


----------



## Dexky

Good luck with JJ today T!!

Julz, I don't believe I've seen anyone, other than Mike, dxed with IBS but pxed Pentasa!  They're just afraid to call a spade a spade!...and how can they ignore family history like that??


----------



## dannysmom

I am sorry for Austin! Hard news ... and all triggered by a jelly fish sting!
Good luck with JJ!

Julz - Thanks for sharing. I am amazed at how many kids actually get diagnosed when they are opened up. Danny is my sickest (and not officially diagnosed) but my other 2 also complain of intermittent abdominal pain.


----------



## MomofIBD's

Tracy....I am with you all today in heart! It has been quite a road less traveled but so very ruff for us. I may seem strong but believe me I do loose it! As I said before humor gets me through! In fact I have to chuckle at that. You could call me a mighty Minnie at just around 4 ft. 9 in. Tall or Short! Lol! Keep us posted I am sleeping but will check in tonight!

Dusty....I look back over all that has happened & feel so much! But most of all I know it could be so much worse than it has been. It was a lot to type & still some is not there. I was proof reading & couldn't go on. One day soon I will finish the last little bit.  Sometimes it all seems so surreal! Did this all really happen. Sometimes my life seems like a book with so many ongoing chapters. I would love to the happiest of ending! We found a CURE! Sighhhhhh someday soon I hope!

Dex....Mikes whole story is so twisted as the Dr's in Philly wanted him out ASAP because my son was hurting so & mad to boot that he said the Dr's dreaded "S" word that involves lawyers Right in front of the Surgeons & Dr's. We think it was the time of year to get the final last surgeries in for the Dr's in training. Since it was a teaching hospital. We should of been there! They were a level 3 Hospital! He had 3 or 4 Interns & Dr's convincing a young man in really bad pain with a slight fever that it was Appedicitis! that CD was NOT Heriditary!!! I believe after they found out they were WRONG they wanted to cover things up! We never did find out what the straw fluid was. They did apparently see a slight thickening in his small bowel if I remember correctly. His GI Dr. at home is the one who did all the scopes & testing. He is the Dr. Who prescribed the Pentasa. I think now that they have found & removed the polyps he will be having scopes in the next year or so. They will keep a closer eye on him. He is a driven young man & has trouble slowing down. It's hard to DX the CD without a biopsy to back it up  or anything else that's not concrete evidence. Time will tell! The GI Dr. Said his Colon was so-twisty turny that it looked like the super Dooper looper! That's why the DX of IBS. Which could cause the constipation. But then again maybe in the back of the GI's mind he wondered if it was so early that nothing showed & somehow his gut knew it very well could be CD! Time will tell!

Thank you All!


----------



## Crohn's Mom

It's days like today that make me want to crawl under a rock....and this is exactly why I decided to start this thread ... :ybatty:


First off....JJ did great with his scopes, and pulled through like a champ! Whew!
I always worry when one of them has to be "put under"...twilight or not.
His doctor came out and talked to us when he was finished (my hubby came with us).  She said everything looks great; nice and smooth and pink, etc., and she was able to get all the way through.  She always gives pictures to take home with us, so I compared them to Gab's when we got home..and wow! It just reminded me all over again how sick she was and no one payed attention ;(
Anyhow, the doctor did not rule out CD as she said that the biopsy's may very well come back showing granulomas, CD, etc.
My husband wanted an explanation (as did I) as to what her thoughts were on JJ's stomach pain if it isn't CD.  She didn't have an answer for us, just basically said let's wait on the biopsy's.
So on one hand she's almost insisting that there's "nothing" wrong when she first came out, then she says wait on the biopsy's because he does have a 40% higher risk, then she wanted to know again when does he see the dermatologist because today happened to be one of the days that JJ's eyes are flaring again with the (eczema). She went back and forth and my poor husbands head was spinning. (I usually do all of this completely on my own so he never hears the "medical talk"...just my take)  At least he has a feel of what I go through now.

So while she was showing us a diagram of where she took biopsy's from, etc...she mentioned the terminal ileum, which led me to mention Austin's SBFT yesterday and how the radiologist said he had a stricture and the appearance of cobble stoning.  She honestly looked pissed off that the radiologist had told me that ! Then she kept insisting that they "just don't know", and how it's a "narrowing" not a "stricture" and what a huge difference there is in the two.  And also how they can't tell if it's "cobble stoning" from that test.  Then she went and got the report and brought it back to show me the word "nodules"( i think) which she said are probably just lymph nodes...THEN she shows me the "nodules" on JJ's pictures and the "narrowing" in his terminal ileum and says "SEE , JJ HAS A NARROWING TOO AND THOSE BUMPS ARE PROBABLY NOTHING".
THEN...she says oh yeah, btw, did they tell you Austin's liver is enlarged as well ? WHAT!
Backtracking a little here to his appt. last week.....doctor insisted that the labs showing Austin's reactivated "mono" was no big deal and not that bad, and that the CMV virus that was active is a good thing and we all "need" to get that over with.  Basically saying that he really didn't have "mono" again.  Then today she was all about the "MONO" and blaming the CMV virus as well for his liver enlargement.  (and I do realize this does happen with mono...)  But this doctor is absolutely driving me up the wall at this point...and my husband as well...and she keeps going back and forth and can't decide.  WTF !

I don't even know if I wrote everything here...or if my ramblings make sense...but damn it this is exactly what happened and how all of the confusion with Gabrielle ended with her suffering terrible for months and months ... all because of the 'NO BIG DEAL...IT'S JUST MONO".
I don't even know what to do now, except wait on JJ's biopsy results and keep and eye on Austin.
Do I just go ahead now and take them else where before I regret it...before they suffer? Or do I just let them both "be" and watch and wait a while more ??  I mean...I just don't know....now Austin's liver is enlarged...it wasn't 2 weeks a go.

Please give me some advice here....I'm going to loose my mind ! :ylol2:

Edit :  The only thing the doctor has is the report from the SBFT, with what the Radiologist saw.  She didn't see the actual pictures herself.  Why do they rely on the radiologists' report to tell them results, and then discount their results ? It makes absolutely no sense to me.  And if the results don't "count" then why the hell do they do the test in the first place ?? She also said it is "normal" to have a narrowing and for the barium to not get through?  Why would the radiologist be concerned about this enough to come tell me himself, and then she says everyone's like that ?? 
She seriously got under my skin today....can you tell ?!??! :voodoo:


----------



## DustyKat

Run, run, run as fast as you can to another doctor!!!! 

I hope and pray T that Austin and JJ DON"T have IBD but something is going on with your boys and they need to be seeing someone that prepared to find the correct answers and not hum and ha till the cows come home. 

In view of what Gabs went through any doctor worth their salt would not question for a second your fears and concerns that your boys may heading down the same path. In fact I would think they would go out of their way to put your mind at ease ASAP no matter what the outcome. 

I know you spoke highly of the docs that operated on Gabs, can you get them back to that facility to see a GI there? 

If they were my boys T that is what I would do. I would cut to the chase and say to them....

"You know what I have suffered with Gabs, it is heartbreaking and something I would not wish on my worst enemy. Now my eldest son seems to be heading down a similar path to Gab when her symptoms started 9 years ago. Not only that but my youngest son, although presenting differently, also has abdominal issues. I am scared and I need to know one way or the other if they also have IBD. I can't and won't let happen to them what happened to Gabs and their current doctor is again dancing around the edges not committing to anything".

I guess what jumps out at me T is the whole narrowing thing. How is there nothing wrong with that??? Narrowing isn't normal physiology, it may turn out to be nothing serious but it still isn't "normal". Dammit T, I don't want to sound like I'm saying your boys have IBD or anything else for that matter but Austin certainly has something going on that needs to be jumped on and JJ, well unfortunately it isn't all that uncommon to experience the extra intestinal manifestations of Crohns well before the intestinal issues show up. Also just bear in mind hun that the scope only see's so much, I know you know that. Matt's large bowel is a perfect specimen too because his Crohns isn't there. 

Go with your gut every time T. To be honest mate, I reckon you've got a lot more of than just your gut to go on here.  

BTW, fab to hear that JJ came through the scopes just fine and handled it all so well, kudos to your kiddo! :medal1:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Thanks so much for the "validation" Dusty 
It doesn't help me much today that I am beyond exhausted and feeling pretty bad physically myself  :/  I am so glad I asked JJ's dad to go with us today tho so he could hear everything as well and see that I don't make this crazy s&%^ up! LOL

In my ramblings I forgot that we told the doc this morning about JJ's new mouth ulcers.  (he never had them before this last week, and now he has 2 all of the sudden) So....what was her response ???.....She actually said that he may have brought them on himself just by thinking about them !!  Seriously !!??!!

Just ran by the pediatric office and picked up copies of the stool sample lab results for Austin and all were negative/normal.  Too bad they can't blame everything in my "imagination" on parasites ! 

I guess I will wait around a week for all results between both boys to be in, and then I will start the process of moving along to another doctor.  The problem with taking them to the Mayo clinic is that it is not a pediatric facility.  Gab's doc will take patients as young as 16 if needed I was told, and on one other occasion he has taken a patient as young as 13 but that was a severe, already diagnosed, a-typical case.  I don't think it will hurt to ask him if he will make an exception for JJ due to his sisters', and now possibly his brothers' history.  Maybe he will be intrigued to study all 3 ?  I can dream :yfrown:  If not then I am considering Arnold Palmer Children's for them both.  For some reason I think it may be best to keep them "together" for now ?  
Any thoughts on that ?
I know that I will probably be basically reading what you suggested saying Dusty,.. it's perfect and will help me so much in trying to explain to them how I, MOM, actually feel in all of this.

I just can not believe what is happening.  I can not believe that their GI doc has such a lackadaisical, let's not "label" them, attitude all over again! I really didn't think I would have to go down this road again.  It's so disconcerting.

Thanks again, so much! :rosette2:

Edit: I keep remembering more....She said that "if" Austin had a stricture or cobble stoning then he would most likely be loosing weight.  He hasn't lost any more than the first 6 pounds (thankfully), however, he HAS lost weight....AND....Gab NEVER, EVER, EVER, had a problem with weight loss.  It's like she has "selective" memory on what she will and will not acknowledge about his sister's history.  UGHHH...


----------



## DustyKat

Wow, JJ must possess some special powers to conjure up things like mouth ulcers! 

If the doc at Mayo feels he can't take them on then I would be asking him who he suggests they go to, and yes I would keep them together. I always like to put it to them this way..."If it was your son, who would you take him too"...usually gets them thinking. :lol:

Good luck with the test results hun and the recommendations! 

Hmmm...gotta say mate, the doc sucks. 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## DustyKat

Okay T, you probably don't need me to say this but picture this...Dusty in the shower thinking about what you have written...on second thoughts scrap that picture!

Again, you probably don't need me to say this but I think the thing that is really getting my back up about the doc goes beyond not wanting to commit to anything but it's the whole attitude thing. It speaks to me of arrogance, a do as I say attitude and that as their mother you have nothing valuable to contribute. There are ways and means of going about things and in my opinion this doc has no idea. I don't know if she has an inflated opinion of herself but she certainly has a poor memory and no ability to correct past wrongs. If she can't admit that she made mistakes in the past then she can't learn from them. Get away from her, she will do your children no good. 

Love ya, :wub:
Dusty. xxxxxxxx


----------



## radchic

I agree with Dusty.  Run as far and as fast as you can.  She is actually causing further harm by not getting this sorted out.  Don't even wait for the results to come in, start looking and asking now.  Good luck!


----------



## MomofIBD's

T! Mom has said it the best! I couldn't agree more! Radchic too! No we don't want our gut instinct to be right! BUT we do want our children to be treated when they are sick not hemmed & hawed over! Not to mention it's all in "YOUR HEAD" type of response DX! The Dr. is sounding too wishy washy! I hate HOLIER than THOU Dr's! It so smacks of how the Dr's in Philly were with Michael! I am so MAD on your behalf! 

How is Gab doing through all this? As well as your boys? Also thinking of You & Your DH through all this! :hug:

Try & get some sleep so you can be on top of your game!


----------



## Dexky

Wow, I got nothing to add T, just do what Dusty and Rachel have said!  With Gabs history, and she still discounts these symptoms and your concerns!!!  It's unforgivable!!  Fire her ass!

On a more serious note T, enlarged liver was EJ's first symptom of PSC.  I certainly hope it is nothing serious but it should certainly warrant their full attention to find out what's causing it!!


----------



## Crohn's Mom

Thank  you all ! 
I just received a call from the GI doc's nurse.  She wanted to make sure I knew about the stool tests for Austin being ok, and that the ultrasound showed the enlarged liver.  She proceeded to tell me that this can happen with someone who is infected with the EBV virus (yes, she said EBV and not CMV) and the doctor wants to have it checked again in 3 months to make sure it goes back to normal. WTF ! 
ya, I lost it at this point.  
That poor nurse...she's so sweet...I made her cry though. Not from being mean...just from me crying; I couldn't help it.
I told her how I feel that no one is listening AGAIN.  I said why would the radiologist come to find me and tell me how concerned his is that Austin has Crohn's, and then the dr. blows it off and says how "normal" his test results are.and now she wants to wait 3 months ! I told her I am scared and I know better than anyone that Austin is not that visibly ill at this point.  I know he keeps saying he is fine and nothings wrong.  He is a 16 year old tough guy that has watched his sister go through complete hell for two years and he wants nothing to do with this disease.  Why would he complain ? I said I also know that Gabrielle wasn't that sick either ! She never complained ! She would sit there with every doctor smiling and saying, "oh it's ok...I'll be fine...It just hurts sometimes" and then she would proceed to talk about the positive things she COULD do.  I made it perfectly clear that I am no idiot, I know he "looks" ok, but I am seriously sick and tired of doctors ignoring me and I can't believe I am going through these same issues all over again with the same pathetic responses from that doctor!

I'm quite sure she will report my "mini-breakdown" to the doctor, as like I said the poor woman was crying too; she knows Gabs history and this is all breaking her heart she said.  I really don't give a flying F&*^ what the doctor says or doesn't say at this point...my sister is coming from out of state for a few days so I am going to enjoy the visit with her and our kids, and then I'm moving on.  I'm not going to be made to feel like I am an over reacting mother any more.  If a doctor, who clearly knows my daughters history, has to be forced to pay attention then I want NOTHING to do with her or her associate doctors. 

@Dex...thanks for telling me that.  I have wondered about the PSC in the back of my mind with Gabrielle because of all of her weird liver symptoms through out the years.  I will definitely not let this liver issue go with Austin either.  
Is PSC something that can "hide" for a long time? Or is it one of those things that when you have it, they know it quickly ? 

@ the rest of  you fine folks....I'm running ! I'm running! you're all too kind! :rosette1:

edit: as soon as I finished this the dermatologist called and said they have a cancellation for tomorrow afternoon and JJ is welcome to have it! YEAH! His appt wasn't scheduled until the 27th so I am very happy about this!


----------



## MomofIBD's

T while reading this a thought came to mind about what Daniels GI Dr. had said. Sometimes kids can be real sick but have not much pain. They either have a high tolerance or their labs a are just not showing it. I am not saying this to scare you but when learning CPR & other various things in class for my CNA. Children have different chemistry make up. They get a different dosage in meds than adults. They have a lower blood pressure, higher heart rate & so on. When you do CPR it is done with a different count of breaths & compressions. Some blood tests have different values in kids. Their nervous systems are not fully developed & thus they may not feel pain like adults do or perceive it like we do. Look how Daniel has presented with strep throat this year. Yes they are typical symptoms but usually with a sore throat. I know your kids are teens now but their bodies are still going through major changes! This also applies to the elderly. This is why we have different Dr's for different age groups! It's not an exact science & they need to think outside the box. A Mom or Dad is a Childs first Dr. observer. My kids Pediatrician said diagnosing is observation & investigation. I hear the Momma Bear in your conviction & know your gonna do it right! Enjoy your time with your sister. Let us know how the Derm appt goes!!


----------



## Dexky

T, EJ's bloods showed elevated liver enzymes early on so they began to investigate quickly.  They could feel his liver was enlarged by palpation.  It' a very slowly progressing disease so I would imagine it could stay hidden for years.

Let us know how it goes with the derm today!


----------



## DustyKat

I hear ya T...:hug:

I have said, on more than one occasion, that I truly feel that way Sarah presented masked the severity of her symptoms. Of course the normal test results only exacerbated that illusion. Sarah didn't complain, when asked she more often than not said she was okay, she didn't make a fuss and her pain, even when her bowel had ruptured, never exceeded a 7. I think this was the most heartbreaking thing to me, had she become so use to living with pain that it became a normal part part of life and nothing be concerned about. I believe it had. 

Have a fab time with your sister and gorgeous kids hun, you so deserve it, you all do! :thumleft: 

Loads of luck with JJ's appointment! I hope all goes well and you get solid answers! 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

Ahhhh !!!  FINALLY !! A doctor who is not afraid to just give a solid answer ! AMEN!!

The dermatologist appointment took all of 10 mins and we were out of there.
I gave him copy of all the recent blood work done on JJ..he reviewed it...looked at JJ's nails and the patch on his leg and said...Psoriasis.  
I said are you positive?
He says, oh yes...his blood test PROVE it IS auto-immune disease and sometimes this is exactly how it starts, which is basically a pre-cursor to what's to come later.
Bingo. Done. Prescription written for the patch on the leg and we left.
He is calling both the pediatrician and the pediatric GI to let them know.

Now what was so damn hard about that !
Whew!....and......NEXT ! LOL


----------



## DustyKat

That is so fab T! Well not fab that he has...well you know what I mean! :lol:

YAY...for solid answers and action! Yeah, what is so hard about that? 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

Crohn's Mom said:


> He is calling both the pediatrician and the pediatric GI to let them know.
> 
> Now what was so damn hard about that !
> Whew!....and......NEXT ! LOL


I hope he makes that GI feel about 2 feet tall!!!  Way to go T!!!


----------



## radchic

That is terrifying.  My daughter was diagnosed with psoriasis of the scalp when she was 6.  She had a huge bald spot and thick scales.  Once we treated it, it pretty much went away but goes in a cycle with occasional flares.  Hmmm, sounds familiar.  She has no other signs that I can see, but now, I will watch a little more closely.  She did say something to me about cramps the other day, but she thought it was her monthly cycle.  I know that psoriasis and Crohn's are auto immune but I just never put it together till now.


----------



## dannysmom

Danny's GI appointment went well today. His doctor is very understanding, sympathetic and supportive. He thought that trying pancreatic enzymes was a good idea (many CF kids need this) and wrote a script, gave Danny a B12 shot to see if that helps with his fatigue, and ordered some stool studies that include parasites that have not been tested. He did not think that it was time for a repeat colonoscopy yet. So we will give this a few weeks and call him back. I will ask about other imaging (MRI) then ... I forgot to bring this up today. He still thinks that Danny has something that is beyond current medicine's ability to detect ... but I like that much better than "if it is not IBD then it is IBS". He does hope that this will just go away as mysteriously as it came and that he has seen that be the case in a few people he knows.


----------



## Crohn's Mom

I'm so glad to hear that you like the GI doc Jeanne 
That's so important!
Hopefully now you are one step closer to getting some answers!
I'll have my fingers crossed that everything disappears mysteriously for your guy! We can dream! 
:ghug::ghug:


----------



## DustyKat

Oh Jeanne, this is so great to hear. There truly is nothing better than being listened to and having your concerns validated. And like you say...far better than...hmmm not sure, must be IBS! 

I will be wishing with all my might hun that this does indeed become just a faded memory, how fab would that be! In the meantime I will be thinking about those tests and looking for your updates...

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky

@Jeanne, I'm in the "hope it all just disappears camp" too!!  Glad this new guy is serious!!

@Rachel, how old is your daughter?  I hope you have no further reason to keep your radar up about her!!


----------



## Crohn's Mom

I received the biopsy results from JJ's upper end and colonoscopy today.
In short:
Benign small bowel
Mild Chronic Inflammation in Gastroesophageal junction biopsy, mid esophagus biopsy, and gastric biopsy.
No evidence of IBD or Microscopic Colitis in terminal ileum, cecum, left colon, or rectum.

Drs opinion and orders ?? .... take some prilosec for 2 weeks .

Yep..that's it....dismissed !! 


Austin is scheduled for a colonoscopy and upper end on the 20th.  She (the doc) basically acted like it's a waste of her time and said the radiologist was "fishing" for CD when doing his SBFT/Upper GI.
Radiologist findings on test:
There is mild rugal fold thickening without appreciable nodularity or distinct ulcer crater.
**Impressions**:
1.Upper GI findings most compatible with mild, nonspecific gastritis.
2. Subtle findings of the terminal ileum but fairly convincing for slight narrowing and mild mural nodularity.

Ultrasound results:

**Impressions**
Hepatomegaly (enlarged liver)

I'm a bit pissed off and at a loss today...oh well...such is the life of CD and trying to diagnose CD I have learned (the hard way).  I'm used to the hard way though, and this doctor, nor any others, will be chasing me off.
Even after her "blow off attitude" today, as she was walking out of the room, she turned to Austin and said...I want you to understand something very serious, even if your tests on the 20th come back perfectly normal, this DOES NOT put you in the clear.  If you start feeling sick again a few months down the road, or whenever, you HAVE to take it seriously and get more tests done because you are at a VERY HIGH risk of having CD !
WTF ?  She gives me a lackadaisical attitude and scares the crap out of my son! ayi yi yi....I know...run run run!  Trust me...I'm putting my shoes on! :voodoo:


----------



## Dexky

T, I don't usually condone violence but I think that B needs a good old-fashioned ass whoopin'!!!  Probably not, but I can dream can't I!!


----------



## DustyKat

So why does JJ have reflux? Not exactly a normal phenomena for a kid. Plus it stills leaves on awful lot of small bowel that hasn't been visualised. 

Hmmm, obviously the radiologist was having a slow day so had plenty of time to actually go fishing. Did she say anything about the enlarged liver? Or was that caught and bagged on another fishing trip! 

The woman is a deadset wanker. Thank god you've got her measure T and know exactly what to do with it...:kissgrits:

:hang:  T! You're doing a brilliant job! 

Much love...:hug:
Dusty. xxxxxxxx


----------



## Crohn's Mom

My thoughts exactly Dusty...why is it "ok" that my 13 year old son has heartburn so bad that he has his own supply of antacids and a favorite flavor? Hmm....she says "Oh everyone has an inflamed stomach?" (yes, she seriously said that !)
Argghhh...I hate this lady!

And Austin's liver she attributes to the CMV infection (MONO), but that's kind of idiotic to me because if it's just an old infection that is reactivated then why did he wake up this morning (a month AFTER "reactivation") with a lymph node swollen in his neck??

Dex, I'm not much for violence either but it was all I could do to hold back yesterday!!

Edit: BTW...she saw NOTHING with her own eyes during the scopes...and came out saying EVERYTHING looked great and said no meds needed! Then the stomach and esophagus biopsy's came back all showing mild CHRONIC inflammation.  Not Acute...Chronic ! This lady is one dumb B for sure ! 
My husband is pissed off and says she's border lining on malpractice..


----------



## DustyKat

Holy guacamole T!!! This just gets worse and worse!!!

I hope you're there utahere: yesterday! Yikes!

Much love, :wub:
Dusty. xxxxxxxx


----------



## lookame

I'm probably over reacting but my little zach has been showing signs off and on for his entire life. Right now he's good, occasional diarreah and vometting but probably not much more than any other normal child. I'll go through his history though
10/3/2006- bundle of joy was born
11/3/2006- blood spots in his stool...gradually getting worse throughout the night. Taken to urgent care, then transferred to the ER. Was told that it is blood, told he can't digest milk protien changed from breast feeding to allementum
11/3/2006-when he started on table foods
Constantly throwing up formula, can't keep it down
10/3/2008- Begins crying in pain holding his stomache at random times during the day. Diarreah becomes presant and is LIQUID and is black, switch from milk whenever we go out to juice 
8/2009-I become symptomatic
8/2010- I am diagnosed with crohns

He's shown some signs of having crohns or whatever but it also seems to lessen when we change to lactose free things. So perhaps it is a lactose allergy, but it's always in the back of my mind. Perhaps I am just a worrier lol


----------



## Dexky

You're not a worrier Melissa, just a normal mom!!  I hope it is just food allergies and you are able to pinpoint the problems!  Good luck!


----------



## DustyKat

Hi Melissa, :bigwave:

Awwww, join the club hun! We are all worriers here! :lol:

Do you keep a diary of Zach's symptoms? If not have a look at the suggestions we have in the wiki. It is so easy to forget the finer details when you are dealing with things day in and day out. A diary just helps to keep it all together...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Have you had any allergy testing done? Maybe that would be a good starting point. Start with the less invasive things like blood tests, allergy tests and stool samples and go from there if need be. 

I sure hope it turns out to be something simple and easily treated. Good luck hun and keep us posted! 

Much love, :hug:
Dusty. xxx


----------



## Crohn's Mom

Overreacting ? On this forum? I don't think that is possible!!  LOL

Seriously, my middle son had the same reaction and symptoms to Allemumentum! (he is 16 now).  This is the exact reason I have started this thread 

I don't think we're over reacting necessarily, I think we are just so in tune with our kiddos that we can't help but think the things we do !!

It's a fine line between watching and waiting on the symptoms they do have, and over reacting on the ones we "think" they do!  I always tell myself that it's better to over react than to under react !!

Keep a diary mom and don't disregard his symptoms just because you think you are over reacting !!

much love,
~T~


----------



## Crohn's Mom

I think Austin may be as brave (or dumb) as they come! LOL Even JJ said he's crazy!
He is prepping for his colonoscopy today, for tomorrow, and he decided to go hang out at the mall for a while! I tried to warn him .... :stinks:

hahaha...gotta love these kids I tell ya !


----------



## DustyKat

Oh okay, no offence T but is he blonde? :lol:

Ah, nothing like a 16 year old that thinks they're invincible! Oh wait, that's all 16 year olds! :ylol:

I hope all goes well tomorrow hun. I will be thinking about you and Austin...

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

As a matter of fact Dusty.....LOL

I guess he was wiser than I 'cause he did just fine...and now he's outside playin some bball!  The "kids" version of prep is really soo much easier on them ! Thank goodness !!

I feel like a bit of an ass today tho...I didn't realize when we scheduled the appt. that it was the day after fathers day; so of course my husband gets his choice of what I cook...and he requested my famous home made lasagna ! Poor Austin will be having his choice of orange or green jello served with a side of chicken broth ! :rof::rof: OOPS !


----------



## Dexky

Hey T, wasn't Austin the one having the four day prep??  Couldn't be much left by now, I'd think  Good luck tomorrow!!


----------



## MomofIBD's

Good luck to Austin tomorrow! He sure is a brave one! Hang in there Mom!


----------



## Crohn's Mom

Austin is all done with his upper end/colonoscopy and pulled through just fine!:ybiggrin: .. And mommy didn't even come home pissed off today! LOL
That _lovely_ GI doc wasn't even a cocky, insensitive, jerk either !
When it was over she actually came into the waiting room and got me herself (which scared the crap out of me quite frankly!) But, Austin was still asleep so I guess she decided to talk before he woke up.
His colon is clean and looks good.
She said there is no narrowing as it showed on the SBFT, but there are "nodules" there in the terminal ileum that she biopsied, (we have pictures of them) but also said that she believes they are "normal". 
His stomach however had quite a few mild ulcers and is red and mildly inflamed, (pictures of this as well)which again she said were "normal" (I personally think she likes that word way too much and uses it too often!).  She says, Oh anyone can get those from simple things like drinking too much soda (he doesn't drink ANY soda) or from taking advil/ibuprofen (he is HIGHLY allergic)! I gave her those responses as she was saying that and she just says "oh really?, well it can happen from antibiotics, or any meds" (he takes NOTHING)
Anyhow, she took a lot of biopsies she said but expects them to be ...yep..."normal"  (whatever !)
Then she proceeded to tell me that we will wait on the biopsy to "treat" him because we want to treat the problem and not him.
Well....what are we going to be treating if he's so normal ?!?!?!  God I hate this woman!
I think she suspects the biopsies will be showing that he's not so "normal", but that's just my instincts because I have known her and how she behaves and responds to things for 9 years now. Probably why she was oh so extra nice to me today...a bit humbled maybe ?? hmmmm.....

So Austin is home now and sleeping away.  He enjoyed the anesthesia a bit too much and kept asking if he could have some for home 'cause that stuff was way too cool! LOL what a character !


----------



## MomofIBD's

T I am glad you are back home safe & sound! Oh & so totally NORMAL! WTF! Sorry but I will be insane on your behalf!!!! She is such a syco Doc! Look I like you & everyone else hope it all comes out good! But you would not be putting your child through ALL this just for the kicks! He is not feeling well & is having pain/problems ect. There seems to be evidence in his tummy! Yeah the biop hasn't come back yet as to what conclusively but come on Doc nothing???!!!! As you know her so well (too bad) at least you see her snake oil tactics for how she is acting! 
Sorry I had too vent if not for you for the injustice that you can't at least have a 1/2 decent Peds GI! 

 T Big HUGssss!!! I hope you get answers soon. Julz


----------



## Dexky

Yeah, I don't think there's anything normal about a 16 yr old having several stomach ulcers (mild or otherwise)!  I guess waiting on the biops is a normal procedure though.  Just get the right answers!


----------



## gypsigirl28

wow.. your story sounds so familiar to me..  I hope you get some answers so the relief can follow.  All the Ped GI docs seem to think everything is normal, or wait they are to young for such a thing....
Good luck


----------



## Crohn's Mom

Julz you can come here and go off on her any time for me ! I just can't seem to bring myself to do that just yet...and trust me I am capable ! :ylol:

I was going over the diagram she gave me of where she took biopsies from and this time (unlike with the other 2 kids) she made notes on the sheet.  I think she accidentally gave me her copy because it has all of Austin's personal info on it as well...looks "official".  Anyhow, she circled all the places she took biopsies which consists of the esophagus, stomach (9 gastric erosions/tiny ulcers), duodenum, descending colon, ileum, cecum, and rectum <the last three parts all had nodules> and she noted "lymphnodular hyperplasia" (LNH) and (NML ??) I don't know what NML stands for ??  mild something maybe ?? anyone have a clue ? LOL.

I can't wait for the biopsies to come in that's for sure !

Thanks gypsi...I've been following your thread and you sure have your hands full! How did your little one's tests go today ?? Any luck ?


----------



## DustyKat

Hey T,

Good to hear all went hun!

Hmph, for a doc that likes the word normal it's a shame she isn't normal herself! And I'm not telling you anything by saying what she visualised in Austin's stomach isn't normal at any age. I don't know what the NML stands for but since she said the colon was clean except for nodules maybe it stands for Nil Mucosal Lesions??

I hope you get solid answers from the biopsies mate...I hope they're not like Matt's...:eek2:! If they are then keep pushing hun 'cause something sure ain't right! Fingers and toes and everything else crossed! 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom

My day couldn't get any better if someone paid me right now !! 

Gab's IBD nurse just returned my call to see if she can start her Cimzia back again this week (yes she can!) and while I had her on the phone I asked if she had a few minutes for some questions and if Gab's doctor was accepting any new patients, and if he would accept a 16 year old.  She said it depended on the case and why.  I explained to her Austin's situation, and my complete disappointment in his doctor, told her of all the tests he has had done, what was found, and that we're waiting on biopsy results, and the pediatric doctor's lack of concern (to say the least) at the narrowing, ulcers, inflammation, mouth sores, sleeping, and nodules throughout his ileum and colon.  She kept saying "oh boy, oh boy", and "are you kidding me?" (in response to the doctor saying he's normal!), etc...
Sooo....she requested that I get every bit of current records together of Austin's, and all test results and to bring them all with me to Gab's next appointment (July 12th) and she will get him scheduled in immediately !!!  
I AM SOOOO HAPPY !!  I don't feel like I am "fishing" any longer or over reacting !!  
I told her straight up that this is exactly how Gabrielle started and was ignored by the same doctor...I so don't want Austin to have this, but I want someone to PROVE to me that it's not Crohn's!  She absolutely agreed and can not believe the lack of concern from the ped. GI !
Ahh....I think I'm crying tears of joy right now!  I have been pretty sad, and questioning my self over and over that maybe, just maybe, I am reaching for something that just isn't there out of fear; well deserved fear, but fear none the less.
Whoo hooo !!  I have hope now that he won't end up silently suffering for years like his sister ! And also, I feel like once I get his foot in the door with Gab's doctor, then maybe just maybe, he will agree to see JJ too ! That may be pushing it a bit since JJ is only 13, but it won't hurt a thing to try.  If nothing else, maybe he will have a great recommendation for someone else to take him to.

I hope everyone's having an amazing day like I am now !!


----------



## MomofIBD's

Oh T can you see my million mile wide smile! Woo Whooo dancing! THATS the the way the medical people should be!!!! Dr's included!!! Not that you or I & anyone else wants something to be wrong. But ignorance is so NOT bliss if something is wrong! It's time to get the right answers & not some ignorant ho hum response to something that is seen & felt.  But is basically being ignored! It sure feels Great to be validated & not be treated like some dimwit parent that doesn't know anything!!! 
You know it makes me wonder just how confident your Peds GI is in her abilities??? 
Things that make you go hmmmmmmm!
Somehow the thought of Gabs GI taking a look at everything would bring peace of mind!!! 
((((((((T)))))))))


----------



## dannysmom

Hi T. When you wrote you are 'crying tears of joy' I started crying for you too. It is an unbelievable stress we parents go through, not just having sick children that breaks our hearts, but the medical fight for attention. Unless you've been through it, it is so hard for others to understand. I am thrilled this doctor will see Austin.

The B12 shot did nothing for Danny; the pancreatic enzymes are not helping at all so far (but it has only been about 4 days). Still waiting for results from 8 containers of stool!     I am regaining my strength and desire to start to push again. Waiting and just hoping it goes away as 'mysteriously as it came' just does not feel right. If Danny has something that unique, at least we should be trying to figure it out so maybe what we learn could help somebody else ... and he feels awful.


----------



## happy

Crohn's Mom,
I am responding to your post about Nodular Lymphoid Hyperplasia. My son (who is now a healthy, asymptomatic, 18 year-old) was diagnosed with this when he was 9 years old after several years of episodic symptoms of abdominal pain, epigastric pain, cramping, bloody stool, weight loss, no appetite, lethargy and pallor. He had a needle phobia so he had very few blood tests. However,  the day he woke up with sausage-like fingers and toes and I insisted that he have blood work, he finally agreed. Blood work showed that he had a protein losing enteropathy with hypoalbuminemia, decreased iron binding, iron deficiency, low TIBC and low saturation index. I decided on the specialist that I wanted to see and insisted that my child be seen by this one only (I had been labelled an hysterical mother previously and he had been diagnosed with IBS-- 'more fiber', etc.). 

The GI who eventually made the diagnosis was not the one who did the scopes, but he assumed that the previous GI saw the hyperplasia because of the description she had given to us (the 'scope report was lost...) even though the biopsies were normal. (She was the one one who had given the IBS song and dance.) This new specialist had me complete a five page history and with this and the blood tests he made the diagnosis. He did warn me that this diagnosis could be part of a Crohn's diagnosis. The specialist's theory was that our son was experiencing episodes, which usually started at the same time of year, of an allergy to something in the environment that he inhaled-- like an asthma attack in the gut. 

He was put on a drug called Nalcrom (Oral Cromolyn) that he had to mix up and drink 20-30 min. before meals. He did this for an entire year-- imagine a nine year-old boy setting his watch to leave class 20 min. before lunch, going to the washroom to mix up this drink, drinking it and then going back to class, or doing this at hockey tournies etc. Whenever we would forget, or the timing would be off ( travelling), a few days later his symptoms would return. After a year, our son told us that he was ready to come off the med because he didn't think he needed it any more-- and he didn't. He has been well ever since!!

He is still very slender for his age, but he has lots of energy and went to provincials for five sports this year. He has no signs of Crohn's disease either.

I developed some form of IBD 15 months ago-- went on an elemental diet for four months and I am doing really well.

I hope that this info is helpful to you. Please ask me any questions that you have. 

May your children soon be well.


----------



## Crohn's Mom

dannysmom said:


> I am regaining my strength and desire to start to push again. Waiting and just hoping it goes away as 'mysteriously as it came' just does not feel right. If Danny has something that unique, at least we should be trying to figure it out so maybe what we learn could help somebody else ... and he feels awful.


I'm happy to hear you say that   I know it feels like we just want to "watch and wait" a lot, at least I know it does for me, but it's great that you are ready to fight some more.

Happy,
thank you so much for all of that information.  Austin did have severe allergy to milk protein, and soy as an infant and had to be be treated for it.  It seemed that he out grew it eventually.  If he is definitely diagnosed with NHL then this momma will be one very happy camper!  I am overjoyed that my daughters doctor at the Mayo clinic here has agreed to now see Austin as well.  I have faith that he will get to the bottom of what is going on with him quickly and we will have some answers and go on from there. 

Julzzz I'm dancing too !!:luigi::luigi::luigi::roflanim::roflanim:
thanks hun!


----------



## DustyKat

Oh man T!!! This is just the best news ever!!!

I am so happy and excited for you and Austin and you must be jumping out of your skin! :banana::banana::banana:

You never know, they may take on JJ as well, Sarah saw an adult GI at 14. Fingers and toes crossed mate! 

:mademyday:  BIG TIME! :ybiggrin::ybiggrin::ybiggrin:

Dusty. xxxxxxxx


----------



## Crohn's Mom

Ah Dusty I am walking on air !! (my secret evil plan is working ! hardeeharrharr! )
:rof::rof:
What a change in my mood/outlook this brought on for me ! I just don't have the words to explain it


----------



## Dexky

Awesome T!  With all you've been through with Gabs, I know you'd raise the dickens before you let another child go through all that!


----------



## AZMOM

Good stuff, T. :ghug:

J.


----------



## Crohn's Mom

Got a call from the nurse at the ped. GI's office that Austin's biopsy results are in.
She said that his colon is all clear with no issues; however, his stomach results showed "chronic inflammation".
She asked if the doc had put him on any medications to treat him when she saw all the ulcers in his stomach during the test..I said nope.  
So, I asked her to copy the pathology report and have it ready for me to pick up.
She said the doctor will be calling to tell me how she wants to treat him.

Like I'm going to let her treat him....yeah right ! 
I can't wait to let Gab's doctor go over all these tests that this idiot doctor is ignoring all the "results" of!

So strange...I get the feeling that the nurse and I are on the same page.  There was something about the way she was saying...."the inflammation and ulcers have been there a long time.."

Onward and upwards I guess now ! 
Have a fabulous day everyone! Hope all of your children are feeling well today! :kiss:


----------



## gypsigirl28

Wow, some doctors never seize to amaze me.  Poor thing has been suffering all this time and it shows in the test results... I sure hope the new doc helps out.. Good luck

love and hugs


----------



## Dexky

Amen T!!  It's time to put her in your rear-view and move along I think!  I hope the new doc can take on Austin and nip his problems in the bud!!


----------



## Crohn's Mom

OMG the nurse called back again to tell me what the "doctor" prescribed for Austin....gee..go figure...Prilosec and she'd like to see him in a month if that's ok?
And then she says....the doctor would just like to make sure again whether or not he takes a lot of Advil, Motrin, etc, because that could definitely be the cause of the ulcers and inflammation.....I said are you kidding me ?!?! I TOLD HER HE IS HIGHLY ALLERGIC !! Anti-inflammatories will KILL HIM...he can't even take a fricken asprin ! 

UGGHHHH.....I am beyond DONE with that office !! WOW ! 
I'm sooo disappointed in her right now !!


----------



## DustyKat

*













 Roll on 12 July!!! 

	
	
		
		
	


	











*​
It can't come soon enough, ay T? And good riddance I say! 

Much love mate, :Karl:
Dusty. xxxxxxxx


----------



## radchic

Perhaps a call to the medical board is in order.  She took a hypocratic oath to first, do no harm.  She is most certainly causing harm by allowing the ulcers she saw 9 DAYS AGO  to go untreated.  She should no be allowed to play with childrens lives like this.  If she is doing this to you, Tracy, knowing what you have gone through, imagine what she is doing to other families?  So happy Gab's doctor is on board.


----------



## lookame

I'm a tad nervous about my little one today. He's going through another day of throwing up without running a fever. He had this a couple of months ago and it lasted a week to a month. I'm not sure what is wrong and anytime I call his doctor about it the doctor tells me to keep an eye on him and watch for dehydration. *sigh* He's napping now, when he wakes I'll see about making him some soup and hope that helps. Not sure what else I can do...


----------



## dannysmom

Hi everyone. Danny's stool tests came back normal (standard culture, parasites, c-diff). The pancreatic enzymes he tried for 2 weeks did not help any. I plan to ask his GI for some imaging. Danny never had a lower abdominal ultrasound, CT or MRI.


----------



## Crohn's Mom

Sorry your baby's not feeling good Melissa...is he doing any better today? 
Make sure you spoil him with lots of popsicles, to help prevent dehydration of course! :ghug:

Hi Dannysmom...wow! I can't believe after everything he has been through no one has done any imaging ! I sure hope they get on that soon.  best of luck


----------



## DustyKat

@Melissa - Oh hun, I'm so sorry to hear about your little 'un...:hug:. That's a long time to have a problem like that and then to have it recur again. Is he getting over it yet? What do think about it?

@dannysmom - I agree, push for more testing. Matt's stool cultures came back negative as well. Good luck and let us know how you get on! 

Dusty. xxx


----------



## lookame

He threw up twice yesturday then took a really long nap then it was like nothing ever happened. It worries me, especially since when he was a month old he had blood in his stool then when he was 2 he would fall on the floor grabbing his stomache and crying...not to mention that sewage diarreah. Since he doesn't have consistancy with his...well I guess symptoms I get pushed aside as an over worried mother. I have a GI app tomorrow so I figure I'll ask him about it. It may be something small like acid reflux or it could be something else but I don;t think it's just he throws up every now and then(specially since it happens more than just every now and then) 

At any rate he's better today so thats good I'll let everyone know what the GI says tomorrow


----------



## Dexky

dannysmom said:


> Hi everyone. Danny's stool tests came back normal (standard culture, parasites, c-diff). The pancreatic enzymes he tried for 2 weeks did not help any. I plan to ask his GI for some imaging. Danny never had a lower abdominal ultrasound, CT or MRI.


There's good and bad in that I suppose Jeanne!  Normal tests are great but they don't explain the ongoing problem.  I hope your GI sees the wisdom of further testing.  Good luck!

Melissa, I agree with Dusty!  There's nothing normal about daily vomiting for a month!  I think it's time to use a little extra persuasion on his doctor to get the ball rolling.


----------



## lookame

I asked my GI about little guys random vometting. He said crohns doesn;t make you vomet unless your VERY sick and it's because you have an obstruction or blockage and your stomache is distended and whatnot, but he did agree that a month long of vommetting was to long and I should bring it up to his pediatrician.


----------



## DustyKat

I have to say that I don't agree with your GI about you not vomiting unless you have an obstruction or blockage. 

Both of my children had vomiting as a symptom of their Crohns and neither were obstructed or blocked. Well perhaps Sarah was in the end but that was after 18 months of being undiagnosed, the vomiting however was there from the outset.

My son had symptoms that were so mild that if his sister didn't have Crohns I wouldn't have even taken him to the doctor. The reason I became suspicious was he had a couple of random vomits one night, followed by a week of decreased appetite and then another night of random vomiting. That was it. He certainly was not very sick or obstructed. 

Don't rule out vomiting as a symptom based on what the GI said. 

Dusty. xxx


----------



## golanv

WOW you have been through a lot!  I agree that you can not be over reactive when it comes to your child's health.  Hindsight is 50-50.  My son told me he had a bloody stool.  I whisked him off to the doctor, who sent him to a specialist and we a had a dx of Crohn's.  I was surprised but after my head stopped spinning and I began researching, then pieces started falling into place.  I remember asking the doctor about seemingly unrelated symptons.  Since my son had many, many allergies, all the symptons were considered allergic reactions.  He was labeled "high risk allergic"......if I knew then what I know now, I would have asked for crohn's testing much, much earlier.
When he was dx, we were at Chapel Hill, NC and the medical care there was excellent.
Hope you get the tests and the results are good!  Thinking of you!


----------



## b.lynnleon

Hi, I am not a parent, but a teen. 

I have been undiagnosed for Crohn's or any IBD issues, although I have been told by various doctors that my symptoms all match the profile, but my biopsies from my 3 endoscopies/colonoscopies I have had this year were "inconclusive." I have been homebound for basically my entire junior year and have constant pain or nausea, etc. They found ulcers after my first scope and they found ulcers in multiple places like intestines, colon, and stomach. I have been passed from doctor to doctor before getting to a GI doctor who, after having my thrid scope, told me he can do nothing for me, but prescribe pain pills and referred me to a psychologist. How a psychologist can fix my nausea, occasional vomiting, and problems going to the restroom, I am not sure, but I am supposed to be looking forward to college and my senior year, but I am always worried about a sudden reaction to food or the wonderful "potty issues." I missed my junior prom and homecoming and feel like my "best years of my life" are being taken from me and doctors don't really care. If i don't have Crohns like my peditrician thinks I do, fine, but at least diagnose me with something and find out what I do have. :/ 

But reading your posts helps me feel like I am not the only one going through these problems and having issues being diagnosed, etc. 

Also has anyone's child developed arthritis? I have deveolped in various places and my pediatrician tells me that is common with Crohns patients. 

I wish my GI doctor at least tried to help me as much as my pediatrician has. 

P.S. Sorry for my many writing mistakes, but talking about it aggravates me lol


----------



## Dexky

Welcome Lynn!  So you have psychosomatic ulcers!!  What a load of #%^+!!!  I hope you find a GI soon who can see the truth!  Meanwhile, visit Cat-a-tonic's Undiagnosed club.  I think it's in the Support section of the forum.  Good luck!  I have a daughter one year younger than you.  I'd raise hell if she were in your shoes!

Oh, and yes arthritis is very common with Crohns!


----------



## b.lynnleon

I think it's a load of bull too and my doctors are from the the children's hospital of Atlanta which also aggravates me because they are supposed to be a good hospital, but I guess not GI wise. Lol thanks I hope I find a better GI too and thanks for the referral to the forum. Plus I would be to if it my daughter well if I had one lol

Well dang because this arthritis sucks..lol try taking SATs writing and APs 3 timed essays...it's sucks


----------



## dannysmom

Hi Lynn,
My son Danny is a bit younger than you (going into 9th grade) and missed his whole middle school experience (Halloween Dances, etc.) It stinks. And it stinks not having a diagnosis because almost everyone simply does not understand .. and too many think you are making a big deal about nothing. Danny also had joint pain ... but only occasionally now. I am so glad your pediatrician is supportive. Our is nice, but does not offer any real help or advice other than his first referral to a GI. Did you ever try prednisone? Your pediatrician can give you a week of it just to see if it makes you feel any better. It helps almost everyone with Crohn's. It made my son worse however - which is one of the biggest reasons why he is undiagnosed. Good luck!!


----------



## DustyKat

Okay, I have no idea about your school system and terminology so how old are you? 

I'm so sorry to hear you are going through all this crap...

We also have a teen forum here. It is password protected so if you would like to access it just PM me or one of the other mods.

I hope you can find some solid answers soon and get some decent relief! Keep pushing and getting second, third, fourth and however many opinions it takes! 

Good luck hun, :hug:
Dusty. xxx


----------



## b.lynnleon

Aww I am sorry I can't imagine going through this when I was in middle school and yes I have had presiding many times and it does very little for anything and has sucky side affects, but as of now steroids are my bestfriend because since I got sick I cannot take any antibiotics. We tried all families...My pediatrician is awesome he actually also volunteers at the children's hospital of Atlanta an is over qualified, if you ask me, for his job. He has also gotten very aggravated with the other GI doctors, immunologist, etc. 

@Dusty I am speaking about the writing portion of you SAT and the essay portion of an advanced placement test where you write 3 essays. My arthritis makes my hands cramp up and get almost jammed. And thank you for your support and I pmed a mid already for it but I might try yousince you seem to be on.


----------



## dannysmom

DustyKat said:


> Okay, I have no idea about your school system and terminology so how old are you?


In US we have school through 12th grade. Freshman is 9th grade, Sophmore is 10th, Junior 11th, Senior 12th. My daughter is the same grade as Lynn. Most kids going into their senior year are 17 or soon to be 17.


----------



## b.lynnleon

I am 17 soon to be 18 in October.


----------



## Crohn's Mom

Hi Lynn and welcome ! 

What your going through with your GI doc sounds very similar to what my boys are going through as well!  The only difference I think is that the doc thinks I am the neurotic one, not my kids ! Its so very frustrating!

Have you checked out the undiagnosed club yet?  There's some really nice girls in there 
I can only imagine how hard it is for you to try and get through AP exams with the way you are feeling...that's awful!

I sure hope you get some answers soon!
Best of luck!
:ghug:


----------



## b.lynnleon

Thanks I Hope I get some answers too and the GI doctors must think my mom and I are both neurotic. lol Also I have been referred to the forum, but yet to post to it. 

Also I wish your boys good health if they are like me I know they can use some.


----------



## dannysmom

Hi ... Just wondering if there are any updates with our undiagnosed kids? 
Tracy, How is Austin and JJ?   
Danny, who had oddly gained a lot of weight the first 2 years he was sick, has lost 24 pounds in the last 6 weeks. His calorie intake and activity level has not changed, nor has his diarrhea frequency .... so it is a bit of a mystery. Our next appointment is in 2 weeks. I have my growing list of requests for blood tests and imaging.


----------



## Crohn's Mom

Hi Jeanne 
I'm sorry I haven't been around here much lately so I just saw your post :shifty:

How is Danny doing now? 24 pounds in 6 weeks ?? thats craziness!  I hope the weight loss has stopped and settled now ?

My boys have been doing pretty well for the most part; so well in fact that I started thinking (again) that maybe I was neurotic and searching for something that wasn't there out of my own fears.  So I had decided to take the watch and wait approach since I couldn't really see a reason to keep fighting doctors when both of my boys kept saying "I'm fine now mom, it's all gone, stop worrying" etc.
Austin has pretty much stayed "fine".  I don't think he's going to tell me if there's a problem unless it becomes major.  He got tired of doctors very quickly and in turn was getting mad at me   So, I have learned to keep Dusty's eagle eye on him and just make mental notes when I see somethings off.  Such as: we sit down for dinner and he only eats about half his normal amount...say's sorry mom but my stomach hurts today.  I just kind of say...everything Ok? And his response is something like...oh yes, I just shouldn't have had that second glass of orange juice today! :lol:  So I watch, and I keep it to myself.
He is scheduled for his follow up ultrasound next week to check he liver again tho.  It was enlarged for "no reason" a few months ago, so Ill be glad to see if it has gone back to normal.  I hope! 

As far as JJ goes, it was interesting after his colonoscopy and upper endoscopy.  He had no symptoms any more.  He felt great he said.  I asked off and on for a couple of weeks how his stomach was and he would say it's fine mom.  So I was thinking hmmm...all he needed was a good ole clean out to help ?? LOL
And then about 2 weeks ago it started again.  Except it started with his old cough from years back.  He had a chronic cough for around 3 years straight that no doctor could tell me what the problem was.  He was on 8 different medications at once with no relief.  I decided after that to take him off of everything because there were no other symptoms and I felt like we were poisoning him instead of helping.  The cough finally went away around a year and a half after we stopped the meds.  And poof...here it is again.  Except this time his stomach aches are back with a vengeance and coupled with migraines and fatigue.  The stomach pain is enough that now he associates them with food and refuses to eat more than a tiny bit at a time because he is afraid of the pain that follows.  I feel so bad for him (and somewhat guilty as well) .. he came up to me last night and says "Mom, what happened? I thought the doctor said my stomach was fine?" I told him maybe he just has a touch of the flu and he will be ok in a few days.  Meanwhile, I have made him an appt. with his pediatrician for this afternoon, and also with the ped. GI for Monday morning.  I hope what I told him is right and he just has the 'flu'...but I don't even believe it myself.


----------



## Crohn's Mom

Doctors appointment for Jj was pretty uneventful for the most part.
He kept talking about abdominal migraines.  He said he doesn't want to overlook the fact that his sister has Crohn's and we missed it, but he also doesn't want to just assume that JJ has it just because she does.  I understand that, but at the same time it frustrates the hell out of me :frown:

So he gave him some prescription cough syrup and ordered some more blood work.  He said he wanted to run the typical CBC and some others and then I finally spoke up and asked for the CRP and Sed rate and a full IGE count to be run as well   He actually thanked me for asking for them specifically.  I'm glad he did because I hate speaking up like that honestly, but after all my family has been through with this damned disease, I just can't let the doctors think they are the tell all anymore when I know otherwise.
He also asked JJ to keep a journal or log of his bowel movements, and headaches, and pain, and what he eats and how it affects him etc.  So I have showed the doctor and JJ the two applications that I know of for the iPhone that are useful for just that.  I figure since JJ is so shy still (who can blame a 13 year old for not wanting to discuss his poop!) then this will be an easier way for him.  He agreed that he will try and keep up with it; then all he has to do is show us his log on the app. 

I'm interested to see what the GI doctors take on his symptoms returning are on Monday...


----------



## DustyKat

God I hate that you are having to go through all this mate...:hug: 

I won't comment on abdominal migraine...:wink: 

Okay, I get what the doc is saying about not jumping to conclusions but since most of the time a diagnosis is made through a process of elimination I would say to him...well let's rule out Crohns before we rule in anything else, not an unreasonable request in my way of thinking.  

Dusty. xxx


----------



## Crohn's Mom

> I won't comment on abdominal migraine...


and I don't blame you one bit !

I have been reading about them and it just doesn't fit JJ in my opinion


----------



## Dexky

Abdominal migraine sounds about as catch-all as IBS!  I like Dusty's suggestion, first prove it isn't IBD, then we'll go from there.  Hang in there T!!


----------



## Crohn's Mom

You're absolutely right Dex ! I didn't even think of that and Gab was on 6mp for over a year...duh!


----------



## Crohn's Mom

OH crap! See I told you my brain is a mess ! I posted my response to you Dex...but it was supposed to be on the "worried about surgery" thread! LOL....more narcotics ?? hahah


----------



## DustyKat

Well he couldn't figure that out T then.....................say no more!

Dusty.


----------



## dannysmom

Hi Tracey. Thanks for the updates. I am happy that Austin is feeling better. Too bad JJ started feeling bad again. I am glad you asked the doctor for more blood work ... I really do not think that is too pushy at all. I read in your other thread that the surgeon wants Gab off her med for the surgery ... I really hope your GI can help with either allowing it or ensuring that she will be able to resume it, etc. How frustrating. How is your recovery going?

Danny still the same ... 2 weeks until our next GI appointment


----------



## Dexky

DustyKat said:


> Well he couldn't figure that out T then.....................say no more!
> 
> Dusty.


It's OK Dusty, you can say it!!  Never stopped you before


----------



## Crohn's Mom

Took JJ for his appt. this morning...useless !
He is going for an ultrasound on Wednesday morning as well.
I have been looking into switching him to Shand's Hospital, it's about 2 hours away, but they seem to have the best pediatric GI's around so it's worth it to me.
I will wait and see what the ultrasound shows, then call to make the appointment if I can't find something closer in the mean time.

She says...oh your stomach hurts that bad ?? Hmmm...(looks at records) you have chronic inflammation throughout your stomach and stuff so maybe thats acting up again and you need some medicine.  Then she leaves the room and says, Ill be right back.  We never saw her again...nurse came in and gave us the form for the test and a script for prilosec. I can't get him away from her fast enough! 
At least his pediatrician is trying to help ... arrghhh.


----------



## Dexky

I'd rather spend two hours driving than sit in an exam room for two hours for that bs!!!  Ugh!!  How can they discount Gab's when looking at Austin and JJ??


----------



## AZMOM

T - I'm speechless.  And that IS saying something.  :yfrown:

J.


----------



## DustyKat

Holy hell T, she sounds like a walking disaster! 

Run, run, run as fast you can!

I reckon the 2 hours will be so worth it, there's nothing like having trust, confidence and peace of mind in the doc looking after your kids ay? Hell I'm not telling you anything T! 

Good luck mate and go for it! 

Dusty. :heart:


----------



## Crohn's Mom

What to do...what to do...I feel kinda overwhelmed and confused right now...
I got the results back from both boys' ultrasound, and most of JJ's blood work as well.  The nurse (from the pediatricians office, not GI) called and simple said "everything is normal for both of them".  So as usual, I said ok thank you and please have copies ready for me I will be there to pick them up.  I went to get them and the doctor happened to be in the waiting room holding a newborn and just hanging around.  He also told me (before I looked at the results) that everything is "fine".; however, he says that Austin has a slightly enlarged liver but he's not concerned so "no worries". I said, but doc thats why his GI ordered the test was because nearly 4 months ago his liver was enlarged, and now it still is and your saying thats "normal"?? He said something like...well that can definitely happen with a viral infection.  So I simply said thank you and took my reports and left.
Now I am home and going through them myself.  Not only is his liver STILL enlarged after 4 months, but now his spleen is as well !!!  And this is 'NORMAL" ???? He is supposedly getting over a viral infection (Mononucleosis), getting better? And now his spleen is enlarging ??  I  am so mad right now I could scream !  Yes, his spleen may be only mildly enlarged, but it wasn't 4 months ago, and...he is on the football team !! All I can do right now is picture him getting sacked on the field and BAM his spleen ruptures !  I haven't heard from the GI's office yet to see what that quack has to say.

As far as JJ's tests:  His ultrasound was actually "normal", which I am happy about.  Also the majority of his blood tests are back, and the doctor said those are "normal" as well.   Someone please explain to me why a doctor does not look back over the series of 4 sets of bloods done in the last year and compare them??  I have and almost every single thing that has been tested these last 4 times has risen each and every time.  There are some "high" markers on a few bloods that have always been high and are getting higher each time (Monocytes, Eos, Platelets).  I know I'm not a chemist or doctor, but these are a few of the "red flags" that were doing the exact same thing through the lengthly time when I was trying to get a doctor to listen about Gabrielle !!  So it's subtle .. it's not outrageous levels I know...but give me a fricken break...the signs that something is wrong with my son are there !!  Why is it "normal" for a 13 year old to have daily migraines, stomach aches, lack of appetite, fatigue, heartburn, and chronic cough ???  Why must they continue to act like I am some neurotic mother who doesn't know what the hell I am talking about !!

Ugghh....sorry for the rant ! I am obviously so upset right now and I'm at a loss.

By the way...the 16 year old, tough guy, son of mine who swears he is "fine" finally admitted last night at dinner (because he barely ate) that his stomach is hurting a lot lately and he is so exhausted and doesn't understand why because he sleeps at least 10 hours a night, every night. Hmmm....Normal ??


----------



## dannysmom

Hugs Tracy! I am at a loss what else to say ... I am right there with you in thought  .... Have you tried to schedule an appointment at the doctor 2 hours away?


----------



## DustyKat

Oh T, my heart goes out to you mate. :hug:

Normal is normal and anything outside of that, no matter how mild is not normal. I don't wish or want anything to be wrong with JJ or Austin just as you don't but your Mum radar is on high alert for a reason as you well know. 
I know you won't let this drop T, I just wish that after all you have been through with Gabs they would jump on things and leave no stone unturned. It just shouldn't be so hard for you the second time round.  

Much love mate, :heart:
Dusty. xxxxxxxx


----------



## Dexky

No kidding T!  How on earth can they look at JJ and Austin, with the obvious family connection, and discount their symptoms?  If, god forbid, eithervof them progressed to Gab's level it would be criminal in my opinion.  

Have they done ultrasound on Austin's liver?


----------



## Crohn's Mom

yes they have dex...maybe I didn't write clearly in my rant..LOL

Austin's liver is STILL enlarged after 4 months, and now his spleen is too !


----------



## radchic

Hi T,
When Lucas was first diagnosed an abdominal US was one of the first tests run.  It showed an enlarged spleen.  This was the single finding that caused my doc to further investigate.  Lucas was also playing football.  I immediately contacted his coach.  He agreed that Lucas could definately not play, but was more then welcome on the sidelines with the team.  God Bless that coach!  For me, the risk outweighed the benefit.  It is crazy that his doc is simply dimissing it.  Hope you find another doc..very soon, that will take this all very seriously.  Good luck and I am thinking of you and your family.


----------



## Tesscorm

Wow, I can't believe his doctor is not taking these results more seriously!   :yrolleyes:   Perhaps it is nothing more than a reaction to a viral infection BUT the fact that this has not changed in four months, that his spleen is now also enlarged and given his sister's history definitely warrants further tests!

I truly just don't comprehend why some doctors don't follow up with any question/doubt?  Is it that they're too busy, or that they deal with 'symptoms' all day and become blase about them???  I really don't get it at all!  :angry-banghead: Get to that other doctor!  Stephen went from March to May with his GP running tests BUT, as they all kept coming back negative or with only mild 'indicators', her take was 'its a virus' or 'let's wait and see'...  at one point, while he was having off/on fever, diarrhea, losing weight, tired and pale, her response was 'let's wait a month'  - this was already after two months of tests (altho, to give her credit, she did say if I wasn't comfortable with waiting, to take him to 'another' hospital since we had already taken him to emergency once).  We took him to the children's hospital next time he had a fever, literally within 4 hours (HOURS!! Not days, weeks...), they were talking to us about Crohns and then confirmed it a few days later with his scopes.

Sorry if you've already answered this, I may have missed this along the way, but can you not take them to Gab's GI?


----------



## BoyMama2000

I can't believe all that you have been through!  My son has no symptoms of Crohn's.  He had an endoscopy to rule out Celiac after being worked up for delayed growth and puberty.

When they saw ulcers in his stomach and  inflammation in his duodenum, they immediately considered Crohns and he has no symptoms!!!

He is still not diagnosed and will see a specialist next week and have a colonoscopy and some other work up to see if this is the case.

I hope you can move on to someone else.

They did put my son on 40mg of prilosec for a month the day of the endoscopy and were going to add in antibiotics if he tested positive for h-pylori (he was negative).

It may not be bad to go on them since this can help the ulcers heal.  My son's script will run out 3 days before he goes to another doc who only treats IBD in kids and his nurse said to buy the OTC prilosec and have him take 2 pills each of the 3 days until we see them.

Gosh, you deserve answers!  I am still shocked that your doctor is so dismissive of everything, especially given your family  history!

Best of luck to you and your kiddos!


----------



## Crohn's Mom

Well, the kid who never complains and insists that NOTHING is wrong with him is now complaining quite consistently this week of pain.
Where's his pain you ask?  

Well..I will tell you...
It's in his upper right quadrant right about the area where his liver and spleen are !
Uggh.....Is this a coincidence ??
I highly doubt it !
And..to top it off he has had 3, yes THREE, major nose bleeds today!
Does anyone else's kids have, or ever have, a problem with nose bleeds ??
Austin has off and on for quite some time now and we have always attributed it to the season, or allergies, or something of that nature.

I am getting worried about him now again, in addition to worrying about JJ again.  Austin really is the "tough" guy who is doing everything he can to prove to me and the world that there is no way in hell that he can have Crohn's or even a cold.  So, for him to be actually coming to ME and complaining really is saying something.
I'm thinking I will call the doctor tomorrow and request an abdominal CT scan to be done just to be on the safe side.  Does anyone think that's a good idea? OR do you think its a waste of time ??

I gotta tell you....I KNOW in my heart of hearts that Austin has Crohns disease...there is absolutely no doubt in my mind.  JJ is still questionable to me and my instincts at this point...but there is just something about Austin that my gut knows to be true.  My gut is also telling me that he is heading in the same dreadful situation as his sister....

Someone please take this dreadful disease from all of our families ! :shifty:

Much love to you all and thank you to everyone who has responded so far...I am not very good lately about responding individually   I do apologize, but I truly do appreciate every single bit of input !


----------



## Tesscorm

Is there a children's hospital near you?  They were the ones who took Stephen's symptoms seriously and were on top of it immediately.  When we took him to the local hospital a couple of weeks earlier, they did do an ultrasound, took blood, etc. but then told us 'yes, he is a bit anemic and, yes, a bit inflamed but...  just go back to his regular GP and have her run some additional tests, cud be an infection, parasites, etc.' and his GP ran tests but then wanted to wait ANOTHER month 'to see', blah, blah, blah...  The only people who seemed to ask the right questions and know what to do with the answers were the specialists at the children's hospital.

We took him at 6:30am when we thought emergency would be least busy and it worked...  by 11, a number of tests were done and they were talking to us about Crohns and had him admitted by 12!

I really feel for you, how frustrated you must feel!!!  I really don't understand why they don't see what everyone here can see - that further tests should be done!  Something is obviously not right, it may not be Crohn's but something is off...

Thinking of you  :ghug:


----------



## DustyKat

I don't think it is a coincidence or a waste of time T. Anything you ask for that may lead to an answer is well worth it as far as I am concerned. 

Sarah, for just about all of her undiagnosed time had upper abdominal pain. I would also ask that they draw blood for pancreatic enzymes to be tested and an ultrasound of the pancreas if that wasn't done with the liver and spleen. Pancreatitis preceded Sarah's diagnosis and is now considered an extra intestinal manifestation of CD and often precedes a clinical diagnosis. Just may be another thing to rule in or out.

Good luck T and keep us posted!
Dusty. xxxxxxxx

PS. No nose bleeds here.


----------



## Crohn's Mom

Tess: Yes, there is a children's hospital about an hour away from us.  However, I had spoken with Gab's nurse at the Mayo clinic a couple of months ago and she said to bring his records and they would set us up.  Well...stupid me didn't do it because Austin was getting SO VERY mad at me and at doctors and insisting that there was NOTHING wrong ! So, I backed off because he seemed to be doing so well! I will call his pediatrician tomorrow and ask for the CT scan...I know he will order it because even though he doesn't always know what to do or look for with CD, he always trust my judgement so I know he will do it; even if it's just a "favor" to me.

Dusty...I just can't stop thinking about Sarah ! 
I don't think I need to say more....
Thank you friend


----------



## Tesscorm

Yeah, guess we all know about the 'backing off'...  I've gotten so that I'm 'afraid' to ask how he's feeling.  Dusty described it once, something about 'cagily' watching for clues.  And, even when he mentions something, I'm afraid to ask for details, I know I can only get one or two questions in, more than than that and he gets 'spooked'  utahere: (which happened tonight! ughh!  He tells me something's a bit off and when I ask for more details he says he doesn't want to talk about it :ybatty

Good luck!  I hope you get some conclusive answers soon! :ghug:


----------



## dannysmom

Gee Tracy! Sorry about Austin's pain. Maybe an ER visit with him is wise. ER doctors should have an opposite approach than normal doctors. They need to rule out the most serious things first, rather that work from the most common problems up. Danny has lots of nose bleeds too.


----------



## Crohn's Mom

> Sarah, for just about all of her undiagnosed time had upper abdominal pain. I would also ask that they draw blood for pancreatic enzymes to be tested and an ultrasound of the pancreas if that wasn't done with the liver and spleen. Pancreatitis preceded Sarah's diagnosis and is now considered an extra intestinal manifestation of CD and often precedes a clinical diagnosis. Just may be another thing to rule in or out.


Dusty..I read over Austins reports from both ultrasounds again and on the one from June is said for Pancreas "the visualized portions are normal", and on the one from last week it didn't even mention the Pancreas so I assume it was normal as well.  

I put a call in to the pediatricians office this morning and explained that Austin is having a lot of pain and requested and abdominal CT order for him.  I am waiting on a call back.  I've also decided that I will pursue Gab's doctor at the Mayo clinic again afterwards, even if the scan is normal, just to be on the safe side.  Even if Austin gets mad about it. :ybiggrin:

I'm still trying to do more research and find a new pediatric GI for JJ.  
He came to me yesterday, concerned that his poo was "streaked with red stuff".  Unfortunately he flushed and I didn't get to see it myself.  So he promised to try and remember not to flush today and to let me go and have a look see myself after he leaves the room today.  LOL...Poor kid is so embarrassed to have mom looking at his poo. 
He was having some awful nightmares last night so he came to me really upset...I went in and crawled in his bed with him and snuggled and slept there all night.  I haven't been able to do that with one of my children in many years so even though I hate that his dreams were so bad, I LOVED snuggling


----------



## DustyKat

Okay, so I have been thinking about Austin and if he does have Crohn's his symptoms, no diarrhoea and blood, would indicate something higher than the large bowel. Let's move away from the upper abdomen for the moment and look to Gabs. Since she has ileal involvement why not target the terminal ileum and see if there is something there, again rule it in or out. 

I know from what you have said in the past, Austin is very athletic and has had some weight loss (I think that is right isn't it?) then he will have very little intra abdominal fat so CT scans don't always visualise these type of patients very well. 
Perhaps another way to go is to have an ultrasound that targets the terminal ileum and have a doc you trust do a decent palpation of his lower right quadrant. As you know Matt had next to no symptoms but with him having very, very little abdominal fat the GP palpated his LRQ for a good 10 minutes and was able to feel a mass, albeit small, it was this, and this alone that really set the ball rolling. To be honest, with Sarah's history the GP said to me there and then he thought Matt had Crohn's. 
If you do go down this track ensure they specifically target the TI as Matt's first ultrasound showed no abnormality except some free fluid in his abdomen. It was the GP ringing the GI with his concerns that led to the GP speaking directly with the radiologist and insisting that he have a second ultrasound with him being present in the room with the radiographer. The rest is history as they say... 

I know there is no guarantee that Austin would have CD in the same area as Gabs but I don't think it is a bad launching point. 

Oh man T, I am so sorry to hear about JJ and I hate with a passion that you are having to go through all this. I know the feelings you are having right now and it sucks...:hug:..but hey what a bonus, getting to snuggle with JJ all night...priceless!  Just wish it was under better circumstances. 

Thinking of ya mate, :heart;
Dusty. xxxxxxxx


----------



## Crohn's Mom

I couldn't agree with you more Dusty ! I had actually just pulled out Austin's results from the upper GI & small bowel test he had done end of May.
 "Subtle findings of the *terminal ileum* but fairly convincing of slight narrowing and mild mural nodularity."  
The radiologist who did this test told me straight up that it looks like Crohn's to him and he even called the GI and told her that himself.  She said he was "fishing" for it and that test isn't very reliable...yet, she's the one who ordered it.

Anyhow, to me, yes, it does look like if Austin has CD then he is looking just like his sister with TI involvement.  I  keep thinking the the pain he is starting to have in his upper quadrant is actually being caused from that "slight narrowing" that may be getting worse.  Just my opinion, but it sounds like you may be thinking something similar as well.

The doctors office called back and he wants to run a series of more blood work.before doing a scan.  And he is talking about doing an MRI instead of a CT scan.  Maybe he's thinking like you as well because Austin is very fit and muscular and there's not an ounce of fat on him.  I didn't know that about the CT scans so thank you for telling me that.  The blood work that's ordered are different than any he's ever had and I don't know what half of them are ..

Amylase, GGT, Thyroid levels, Urinalysis, Lipase, ANA, C, INH, and T89

I think one of those checks the pancreas enzymes ??
He wrote STAT on the order and said as soon as he gets them back he will decide on the MRI.  
I just hope Austin is smart enough to know that if his pain gets too bad durning football practice then he needs to sit out; but...he's a tough guy so who knows.

Thanks for all that Dusty ! Much appreciated


----------



## DustyKat

I'm not familiar with all of those either. 

Amylase is the pancreatic enzyme, GGT is a liver enzyme, Lipase is another enzyme and ANA is an auto immune indicator but is more specific to Lupus, RA and Scleroderma, Matt's came back negative. 

Keep the momentum going and by the sounds of it the TI is definitely something to revisit. 

Good luck hun! 

Dusty. xxx


----------



## AZMOM

T.........

Just wanted to send you a big online HUG.  I'm keeping up and hoping for the best - an ANSWER!  

:heart::heart::heart::heart::heart::heart::heart:

J.


----------



## dannysmom

I think the C, INH may be for C1-INH:

"Deficiency of this protein is associated with hereditary angioedema ("hereditary angioneurotic edema"), or swelling due to leakage of fluid from blood vessels into connective tissue.[5] Deficiency of C1-inhibitor permits plasma kallikrein activation, which leads to the production of the vasoactive peptide bradykinin. Also, C4 and C2 cleavage goes unchecked, resulting in auto-activation of the complement system. In its most common form, it presents as marked swelling of the face, mouth and/or airway that occurs spontaneously or to minimal triggers (such as mild trauma), but such swelling can occur in any part of the body. In 85% of the cases, the levels of C1-inhibitor are low, while in 15% the protein circulates in normal amounts but it is dysfunctional. In addition to the episodes of facial swelling and/or abdominal pain, it also predisposes to autoimmune diseases, most markedly lupus erythematosus, due to its consumptive effect on complement factors 3 and 4. Mutations in the gene that codes for C1-inhibitor, SERPING1, may also play a role in the development of age related macular degeneration"

No idea about t89.

Good luck.  I've been reading alot about MR vs CT and it seems that they are now recommending using MR imaging for Crohn's kids rather than CT due to radiation of CT and the MR results can be just as good.  Danny is finally having an MRI next week.


----------



## Crohn's Mom

I'm so happy to hear that Danny is finally having an MRI ! 
Best of luck to him..and let us know how it goes .

J .. sending hugs right back !! thanks hun


----------



## lookame

Zach had his 5 yr checkup on Thurs. I talked to his dr about his vometting and she prescribed prevacid. When he was a baby(after the bloody poos they put him on almentum which he couldn't hold down) he would vomet 3-4 times a day. He has the bloody diarreah at a month old and he also had severe watery diarreah at the age of 2. 

Anyway so the past year he would go through weeks of vometting daily so she prescibed prevacid to help with what she thinks is reflux(please remeber for years y doctors thought I had basic reflux...) also after being weighed she came in and talked to us about how he has only gained a pound and a half after a full year. ONLY A POUND AND A HALF!!! Of coarse I'm concerned but his doctor feels it's ok since both parents are skinny she just suggested adding high protien foods into his diet. I don't know *sigh*


----------



## BoyMama2000

I would get a 2nd opinion if you can.  Do you ever see blood in his stool?  If they have not done any work up, I would probably go get another opinion.  There are many food allergies and other things that can cause this type of thing as well as inflammatory bowel disease.

There is also a condition called cyclic vomitting disorder.  That is only diagnosed after other things are ruled out.  Does he ever get headaches with his vomitting?  I have a son with cyclic vomitting/migraines. They are linked. That is why I asked.

Is your doctor a pediatric GI doc?

Best of luck to you and your little guy!


----------



## lookame

I do think he has some sort of food allergy. I do know he gets terrible watery black diarreah after he drinks a lot of cows milk so we switched him over to lactaid and it's helped a lot. When he turned a month old he did have bloody diarreah as well and after doing a couple of scans just marked it up to not being able to digest the protiens in milk so they put him on allementum(special formula) which made him throw up several times a day and it wasn;t until he was officially on table foods that the throwing up stopped. Not even acid reflux medicines helped the throwing up.

Now he gets into cycles of throwing up which happen daily for a couple of weeks then stop for a couple of months. His prediatrician thinks it's just acid reflux acting up during a cold. *shrug* I'm concerned about his miniscule weight gain...after a year he's only gained one pound and a half...and he's 5? And she's not concerned? 

So far since the little incident at a month old he hasn't had any blood(as far as I've seen...I don;t really run in and check and he also doesn't want me around while he uses the bathroom lol)

As for the headaches, he does get them but not really to the form of migraines. His cousin(which he;s very close with) tends to get migraines to the point of throwing up, but my lil guy doesn't really get them. And I've also talked to my GI about his vommeting and he said it was nothing and not linked with any IBD unless he's really really sick *shrug*


----------



## BoyMama2000

If he has cycles of throwing up followed by cycles of being totally well, he could have cyclic vomitting. Many kids have no headaches but many get migraines as they get older.

Here is a web site and a forum site for that illness:  there are great doctors listed on it as well.
http://www.cvsaonline.org/message.html 

He could also have a true milk allergy that causes gastritis and ulcers which could explain the black stool.  I would look into both with a doctor who will really investigate them.  

Let us know how it goes and if you have questions about cyclic vomitting syndrome.


----------



## DustyKat

Interesting!

Reading about these cycles reminded me of when Sarah was in her pre diagnosis phase.

About 18 months - 2 years out from diagnosis she would have episodes of nausea and vomiting, sometimes accompanied by a headache/sore eyes and sometimes with upper abdominal pain. They would last a day and she would be a bit washed out the following day but would otherwise return to normal for a period of time and then it would start all over again. She was eventually given a diagnosis of Abdominal Migraine, of course this was not to be the case. 

The thing is, it wasn't until I started to record her symptoms that I realised just how cyclic they were. They started at about 2 monthly intervals, then progressed to monthly and by 6 months out from diagnosis they became fortnightly and I mean almost to the day! They then went to weekly and finally in the last 2 weeks were consistent. 

Dusty. xxx


----------



## BoyMama2000

That is interesting.  I have 3 boys.  The oldest (15) had transverse myelitis when he was 12.  He went from playing hockey to being totally paralyzed from the waist down in 24 hours.  We had not idea what was happening.  Of course, he was hospitalized with millions of tests and doctors with him every 15 minutes for the first 36 hours.  He suddenlly started to be able to move his toes again, then over several months of rehab he returned to sports and normal mobility.  He didn't really totally regain his level of ability for about 24 months.

My youngest (age 11) is the one with cyclic migraine sydrome which is a subset of cyclic vomitting syndrome.  They started at age 2 but we didn't think much of it until he was 4 and told us he had a headache with his vomitting.  When we looked for migraine triggers, I realized that the only time he missed pre-school was when he had this same issue.  I looked back at his records and realized they happened every 9 weeks to the day!  His pediatrician always wanted me to call on the first day of the migraine (they last 3) and when we could get off of the phone, she would say....we will talk again in 9 weeks.  Then we had his records reviewed by a doc at the Cleveland Clinic who was a migraine specialist.  He told us about the rare disorder.  He gave us great news because of all of the kids he had with cyclic migraine, every one outgrew them around puberty with the exception of 2 twin girls.  At age 8 they started to slowly move apart. It was good news but it actually threw me off because I could plan around his migraines to the day before!  Now they are between 11-12 weeks apart.  He always has an aura the day before.  Then we know 100% that he will get it the next night when he is asleep or just as he wakes in the morning.  I email his coaches and teachers to let them know it will be tomorrow.  I also warn them of the week it will come. My boss is great and I always make sure to plan lectures or important meetings around it when possible.  His vomitting is much less now and the headaches seem a bit more mild but he is totally out for a day.  Day 2 and 3 he can get to school late and they accomodate him a lot. We like the path it is taking and are hopeful it won't be a life long thing. We thought our issue with him was enough but after the transverse myelitis, it seemed like nothing!

We really can't believe that we are now on a medical journey with our middle son.  He too got migraines when he was younger but they were mild and only a few a year.  They stopped at around age 11.  We are still waiting for the results of the latest Celiac test and granulomatous disease test.  After doing some reading, there are a few cases of Celiac with granulomas that go away after a gluten free diet so who knows.  I need to wait and then see if I want to push for more testing. One interesting thing I just learned is that my father-in-law had multiple granulomas when he was diagnosed with esophagus cancer at age 65.  He was not a smoker or a drinker and we always wondered what his risk factor was for this type of cancer.  My mother-in-law told me this yesterday when she asked about my son's doctors visit.  I know that Crohn's and Celiac can increase cancer risk, especially when untreated.  Perhaps he had one of them and was never symptomatic or diagnosed.  This may be why he got esophagus cancer.  I am curious if he had any GI symptoms.  Unfortunately he passed away after a 2 year battle.

It certainly seems that strange and perhaps rare autoimmune illness runs in our family.  Perhaps that is why these illnesses like CVS and Crohn's can be hard to differentiate initially.

I know we all want to know what is going on right away but I guess with so many things to think about, we can't always get that wish.  Time will tell with those of us waiting for a diagnosis!  In the mean time we can all hope for strength to get through and enjoy all that we do have...corny but true I know.

Hope the CVS site helps to at least educate you about another possibility.


----------



## DustyKat

> Hope the CVS site helps to at least educate you about another possibility.


It has! 

I have just been reading up on CVS and I see many similarities with Sarah!

It now also has me thinking about the whole auto immune thing again. So many possibilities, so many questions! :eek2:

Migraines, Asthma, allergies...and on it goes. We have all these things in our family and as time goes on research seems to be finding more and more links, that these things are are auto immune, an abnormal response. Now that my son has also been diagnosed I have no doubt there is a genetic link but even before this I was looking for a reason, a link. Because we have these genetic markers in our family I know having a parent with asthma may lead to a child having allergies or eczema or asthma and so on, if they are auto immune then why can't it show as another type of auto immune disease, namely Crohn's in our case. 

Is there a possibility that CVS is auto immune? 

Can CVS precede a diagnosis of Crohn's just as many of the extra intestinal manifestations do? 

:lol: Just me thinking out loud! 

Sunday afternoon musings, 
Dusty. xxx


----------



## BoyMama2000

CVS does have overlapping symptoms of Crohns but it remains soley periods of vomitting with or without headache followed by totally 100% normal periods in-between.  Most of the kiddos have a specific cycle or pattern they follow each time. My son's migraines are so predictable and although changing over a period of years, they are virtually the same migraine each time.  

There is a lot of research that kids with only the vomitting component can grow up to have migraines but I have not read about any IBD link.  I would think it is more that there are a few similar symptoms.

I am not sure about the autoimmune component with CVS.  Most kids do outgrow it but there are adults with it as well.  Either way, GI docs treat both.  We got to a neurologist since my son has a much stronger migraine component.  There are docs on the CVS web site you can email.  They are great.  There are kids there that do well with some vitamins as well.  We have tried it all with my son and nothing really  made a difference but time.  We do give him 12mg of Zophran and 12 mg of phenogren to stop the vomitting.  The Zophron dosage(used normally to stop vomitting with chemo patients) is 3 times what they give cancer patients.  It is crazy but it is what is needed to stop the very stronge urge to vomit in these kids.  Many of them need to go to the hospital and go on IV's each time because it is so severe. Thankfully, my son has never needed to do that.

I forget, has your kiddo had an endoscopy/colonoscopy done?  CVS can only be diagnosed after all else is ruled out.  My son never had them done because his was easier to figure out with the headache, light sensitivity component.  They were more concerned he may have a brain tumor at first but once we saw it came every 9 weeks, that ruled that out!  Interestingly, my husband and I don't ever get migraines nor do any of our family. That is what made them even more concerned about a tumor when he was 4.  Needless to say, we happily took the diagnosis of migraine!

I imagine CVS could be in the differential diagnosis early on with Crohns and with your family history I would think all of this should be ruled out.  That site and the doc recommendations there may be a good avenue for now!


----------



## dannysmom

Interesting stuff! Migraines, asthma, allergy and eczema all run in our family.


----------



## DustyKat

I think I may have misled you BoyMama, sorry. Sarah definitely has Crohn's and was diagnosed 5 years ago during emergency surgery, but the symptoms she had pre diagnosis were eerily similar to CVS. 

Dusty. xxx


----------



## Crohn's Mom

HI all 
I think I need some guidance here...help? Talk me off that ledge I want to jump off of ?? LOL
I am going to try and keep this rather short, sweet and to the point; forgive me if I don't. :shifty-t:

Took JJ to the doctor today for what I thought/hoped may be the "flu" for 4 days.
Symptoms were sudden onset of fever (+101F), headache, tummy ache, fatigue.
Fast forward 4 days to today...
Fever gone, but the headache and tummy ache and fatigue did not go.
Same symptoms for the last few months.
I do not think it's the flu....possibly a virus that was short lived.
Temperature spiked again today, so decided to pay the doc a visit just in case.
Doc listened with half and ear and decided that JJ is suffering from migraines (because Mommy does), or abdominal migraines. hmmm....
Doc decided to prescribe Inderal (Propranolol) Migraine meds 4 x's per day..
Mommy said HELL NO !! 
I inquired if his headaches could be from his eyes ? (he complains of pain in his eyes as his "headache")...doc said...probably not!
Mommy said....WHATEVER!!
I took him straight to an eye clinic and was lucky enough to get an appointment 45 mins later.
Eye doctor did a routine examination and dilation.
JJ definitely needs glasses and they were bought, paid for, and finished within the hour!
However,
The doctor, after doing the dilation and exam, looks to me and says....

*"Ummm...mom, I know this is going to sound like a really strange question, but....does anyone in your family suffer from Colon Cancer or Bowel disease??"*

What ????? Mom is in shock...laughs nervously and says...um..no cancer but his sister has severe crohn's disease, why do you ask?? (ya..I thought I already knew...but I didn't !)

He proceeded to inform me that JJ has what is known as _"Chirpy"_  CHRPE  "Congenital hypertrophy of the retinal pigment epithelium"
It's basically...freckles on/in his retina (and similar to polyps in the colon!) ...and, he said would not be an issue if there were only ONE  of them...however, JJ has at least 3-4 in EACH eye !!

So....we talked awhile...and long story short...he wants JJ to see a Rheumetologist.
I went immediately marching back into his Pediatrician's office and informed him and asked his opinion.  He was astounded and had no idea what that was !
He understand the eye guys recommendation, however....he wants us to start with an Ophthalmologist MD pediatric specialist ...at the Shand's Childrens Hospital in Gainsville !! (around 2 hours from here..but amazing reputation!!)

I'm so confused, overwhelmed, freaking out, trying to breath, OMG !! Honestly...all I keep thinking is....is my baby going to have colon cancer ?!?! before he's 30??  I'm almost wishing for Crohn's at this point !!! Or....could this be a form of Uveitis ??  Or just a strange EIM ??  The eye doc seemed very interested in JJ's history after he found this out and extremely interested that He has stomach pain, fatigue, psoriasis, and he is HLA-B27 positive !!

Does anyone happen to know anything about this CHRPE condition in the eyes ?? 
If not...do you want to research, without my emotions, and tell me to calm way down and it will all be ok ?? 

Im scared for him....but at the same time...I'm not.
Does that make sense ??

Help please


----------



## DustyKat

Whoa T, talk about unexpected! :ywow:

First up, kudos to you T for doing what needed to be done and following your instincts! :hug: 

Why does the doc want him to see a Rheumatologist? 

I think seeing an Opthamologist is a good first step under the circumstances. 

I don't know much about CHRPE aside from the basics but in a quickish search I haven't been able to find it linked specifically to IBD. It is certainly mentioned in numerous articles as an EIM of other diseases/disorders and the most common of those is FAP (Familial adenomatous polyposis). From your concerns I think you may already know this hun. I will keep looking though T and if I find anything I will surely let you know. 

Oh T, I wish I could be of more help to you and yes T, you are making sense.  

Always in my thoughts and prayers mate, :heart:
Dusty. xxxxxxxx


----------



## Dexky

Have you made an appt. with the Optho?  I agree with Dusty, that's the best place to start.  Please take your internet research with a grain of salt T!!


----------



## dannysmom

Oh Tracey - how frustrating. (Your ped drives me nuts! Migraines!) I am not sure this reply will help calm you down (sorry)... I am asking some questions.

I read that patients with FAP tend to have CHRPE (average 6 per eye), but not everyone with CHRPE will have FAP. It does seem wise to have colonoscopies to check for polyps .... and it is good that JJ did not have any on his colonoscopy this summer!

Why not make the rheumi appointment now? (With positive HLAB27 and autoimmune rash - it makes sense to me) Sometimes there is a long wait. Do you need a referal? Does JJ have any joint pain?

I re-read your first post on this thread to make sure I knew JJ's and Austin's symptoms. Where is JJ's stomach pain? Has it always been constant since last July? I am wondering if it is high and corresponds to the inflammation found in his colonoscopy:

"Mild Chronic Inflammation in Gastroesophageal junction biopsy, mid esophagus biopsy, and gastric biopsy.
No evidence of IBD or Microscopic Colitis in terminal ileum, cecum, left colon, or rectum.
"
Did the prilosec help him at all? 
As I've written before - Danny has constant abdominal pain (right below his belly button), fatigue, and headaches too. He also associates his headaches to eye pain and when his headache worsens the number of floaters he has increases. We still have no clue what is wrong with Danny though. Danny has been having more joint pain lately so we are going back to the rheumi next month for repeated blood work. 

good luck
((hugs))


----------



## Tesscorm

Tracy,

I'm so sorry to hear that you now have more worries!   I hope the appointment at Shands is scheduled quickly.  Until then, try to remember what Danny's mom said, that not all cases of CHRPE are an indication of FAP.  And, from the very, very little I've read, it also seems that FAP is often inherited from a parent.  I imagine if that were the case, you would have mentioned it in your post.

I know its so easy for me to say but try to not overwhelm yourself with worry until you and JJ see the opthamologist.  I'll be thinking of you!  :ghug:


----------



## DustyKat

How is JJ going T? 

Thinking of you! :heart:
Dusty. xxxxxxxx


----------



## Crohn's Mom

JJ is doing better as far as the "virus"..no fevers and he's feeling pretty good.
Also, he hasn't had a headache since he started wearing his glasses!!

He's still having stomach aches so it's good to know now that they are not related to his headaches after all.

We've had a really busy couple of days due to the holidays and my husbands family flying in and staying with us, so I took a break from worrying and researching   My anxiety was out of control after JJ's eye exam the other day and I didn't see it coming when it hit me.  So I had to take a step back and just breath.
I will start making phone calls next week and decide what our next step is from here.  I did find out that there isn't a pediatric opthamalogist at Shand's in Gainsville tho, but I have found a few other that are closer and I may just start there...just not sure yet.  Still just trying to relax, breath, and not worry too much over something that could very well end up being "nothing" 

Thanks a bunch everyone ! I appreciate your support more than you know!:heart:


----------



## DustyKat

Thanks for the update T. 

Good news about the headaches! YAY! 

I'm so glad you have been able to breath even a little. It sure came out of left field so I can well imagine how you felt...:hug: 

Thinking of you T and your kiddos...:heart:...Good luck next week sweetie. 

Dusty. xxxxxxxx


----------



## BoyMama2000

Wonderful news!!!!!


----------



## DustyKat

Thought I would sticky this thread as I notice there are few newbies lately around the forum with children that are undiagnosed. 

For some reason or other, it's so wet and miserable here lately that I'll use cabin fever as my excuse!, it never enters my head to direct anyone to the undiagnosed kids thread! 

	
	
		
		
	


	





Dusty.


----------



## BsMom

Hi all, my 13 yr old son had an upper and lower GI and the only thing that showed during the test was that he had ulcers in his stomach? The biopsy results were negative for Celiac's, Crohn's, UC and every other GI issue.

This year it started with a stomach virus? We thought that it might be Celiac's because he is allergic to Wheat and Gluten but the blood test came back neg. Then went to a sinus infection and then to the flu (did test positive for flu B) which we all had. His ped ran tons of blood test and the only thing that has come back abnormal has been his thyroid levels that the Endo said was either do to illness induced or steroid induced (steroid were used along with antibiotics to try and get rid of the sinus infection)? She did find that his Vitamin D level was low 24 (normal is 30 to 74) and put him on Rx Vitamin D. After he finally go over all of that and the joint pain never went away after the flu the ped started thinking that he might have Crohn's. Since he has had a rash on his face, abdominal pain, bloody stool, low grade fever and the joint pain. When we met with the gastro his first thought was Crohn's too.

He doesn't ever get sick until school starts and then he winds up with whatever is going around.

Thanks ~ BsMom


----------



## DustyKat

Aside from the biopsies being negative did they see anything that didn't look normal? Any inflammation in his large bowel or at the beginning of the small bowel? 

I noticed in the Your Story thread that he had been taking a NSAID which could explain the abdominal pain and if the bleeding he had was dark blood it could explain that too but it doesn't account for his other symptoms. If he does have IBD then many people do experience EIM's (Extra Intestinal manifestations) well before the intestinal one's develop.

How does he find school? Does he get anxious or stressed? These can be triggers for a lot of people with IBD. 

What is his weight and height like? 

Sorry for all the questions! 

Dusty. xxx


----------



## Dexky

There's been a lot of talk lately about Vit. D deficiency and crohns.  Have a look at this Mom....http://www.crohnsforum.com/showthread.php?t=23826&highlight=vitamin+D

Good luck with him!  I hope it's not crohns but you are doing the right thing.  Keep pushing till you know for sure.


----------



## BoyMama2000

I am sorry you have been through all of this.  What are his symptoms now?  Does he still have bloody stoo and/or the face rashl or was that just around the time of his illness?  If he is feeling well, it may be good to ask for the Vit D and thyroid again to make sure it is back to normal. 

When he had the flu, did you give him advil (ibuprofen, aleve...any NSAID)?  If all of the biopsies and scopes were normal, it could be the meds that gave him ulcers.  Did they prescribe prilosec for 30 days for them?  

If this keeps happening, you may need to get another set of tests done but it certainly all could be the effect of a virus.  If he is feeling well and his thyroid and vit D are normal now, I would watch and wait.  If not, you should use your parental instinct and go back to see the same doctors or get a 2nd opinion. 

Let us know how he is doing!'

I will update the rest of you on my 13 year old after we go see his endocrine and GI docs next Tuesday for his 3 month follow up.  I have been too afraid to measure his height because I don't want to discourage him but we think he has probably grown a bit.  He has also gained at least 10 lbs after not gaining any weight for 2 years!  

Best of luck to you BsMom!


----------



## Crohn's Mom

Hi B's Mom 

I don't have much to add to the great advice the others have given, I just wanted to wish you the best of luck in finding answers. I know all too well how frustrating this road can be.

We also have noticed a sort-of pattern to the time of year when my daughter seems to be showing more symptoms, or flaring ~ it usually begins in the fall months, gets a bit worse by November and then settles near spring.  I know others have discussed this around the forum, but I can't remember where to find that thread ~ sorry .

I wish you the best and please keep us updated on how he is doing


----------



## Catherine

Jj mom

Has JJ been tested for asthma.  Sarah only symptom of asthma was a cough which never went away.  Our test for sarah was to take ventolin, if cough went away was asthma.


----------



## Crohn's Mom

Hi Catherine  
Yes, JJ has indeed been diagnosed with Asthma since he was 18 mos old and in the icu hospitalized for severe pneumonia.   His chronic cough had been an issue for nearly his entire life  we have tried so many cough meds through the years. Right now he takes Hydromet ? We can only give it when he's home
Tho as it makes him loopy since it has codeine. I really wish we could at least get to the bottom of even his chronic cough ! He has been on soo many meds to treat it to no avail. 

Thank you and I will check into the med you have mentioned for sure


----------



## BsMom

DustyKat said:


> Aside from the biopsies being negative did they see anything that didn't look normal? Any inflammation in his large bowel or at the beginning of the small bowel?
> 
> I noticed in the Your Story thread that he had been taking a NSAID which could explain the abdominal pain and if the bleeding he had was dark blood it could explain that too but it doesn't account for his other symptoms. If he does have IBD then many people do experience EIM's (Extra Intestinal manifestations) well before the intestinal one's develop.
> 
> How does he find school? Does he get anxious or stressed? These can be triggers for a lot of people with IBD.
> 
> What is his weight and height like?
> 
> Sorry for all the questions!
> 
> Dusty. xxx


Dusty nothing looked abnormal and all of the biopsy's came back normal too??? He had been doing better this weekend his temp was back closer to normal but now tonight he is running 99.5 again which is high for him. The joint pain is still hanging around too along with the rash on his face.

School...he tolerates school and it would be better if he was in a music magnet school or something. Our school district is very strict and lots of bullies. I think that his weight is normal for him he is 5' 3" and 95 lbs. but, my husband is tiny 5' 5" 125 lbs so I doubt that he will ever be much taller than 5' 6-7".

I am starting to think that the NSAID aggravated what ever this is that is going on?


----------



## BsMom

Crohn's Mom said:


> Hi B's Mom
> 
> I don't have much to add to the great advice the others have given, I just wanted to wish you the best of luck in finding answers. I know all too well how frustrating this road can be.
> 
> We also have noticed a sort-of pattern to the time of year when my daughter seems to be showing more symptoms, or flaring ~ it usually begins in the fall months, gets a bit worse by November and then settles near spring.  I know others have discussed this around the forum, but I can't remember where to find that thread ~ sorry .
> 
> I wish you the best and please keep us updated on how he is doing


Thanks :ybiggrin: I wonder if the illness' are related to stress of school along with the germs that just love to hang around schools and kids?


----------



## BsMom

BoyMama2000 said:


> I am sorry you have been through all of this.  What are his symptoms now?  Does he still have bloody stoo and/or the face rashl or was that just around the time of his illness?  If he is feeling well, it may be good to ask for the Vit D and thyroid again to make sure it is back to normal.
> 
> When he had the flu, did you give him advil (ibuprofen, aleve...any NSAID)?  If all of the biopsies and scopes were normal, it could be the meds that gave him ulcers.  Did they prescribe prilosec for 30 days for them?
> 
> If this keeps happening, you may need to get another set of tests done but it certainly all could be the effect of a virus.  If he is feeling well and his thyroid and vit D are normal now, I would watch and wait.  If not, you should use your parental instinct and go back to see the same doctors or get a 2nd opinion.
> 
> Let us know how he is doing!'
> 
> I will update the rest of you on my 13 year old after we go see his endocrine and GI docs next Tuesday for his 3 month follow up.  I have been too afraid to measure his height because I don't want to discourage him but we think he has probably grown a bit.  He has also gained at least 10 lbs after not gaining any weight for 2 years!
> 
> Best of luck to you BsMom!


BoyMama2000

Thanks :ybiggrin: His main symptoms are still the stomach pain, joint pain mainly in his right knee and ankle, rash and then temps around 99.5. He only had the one bloody stool so far. Just about all of the symptoms started around Thanksgiving when he had a sinus infection that took several anti-biotics and steroids to get rid of then the flu at Christmas. He has had tummy troubles since he got shingles three years ago. In two weeks we go back to the Endo to get his vitamin D levels checked and I will have her check his TSH again too.

When he had the flu it seems like I was alternating Tylenol and Advil to get rid of temp and manage the body aches. The GI did put him on prilosec twice a day at least until tomorrow when I call to check in on how we have been doing.

We have tested him for tons of virus' and all of them have come back negative. Mono was one of the first ones and we did the titter test which came back fine, I don't even think that exposure came up on it?

Tomorrow I am calling the Pedi along with the GI and see what someone can come up with.


----------



## DustyKat

Hey Mum,

You may well be right about the Advil. 

Since it is on the more uncommon side for children to develop shingles did they ever hazard a guess as to what may have brought them on? 

Could any of the pain he is experiencing be postherpetic neuralgia? Or any of the symptoms be related to the original herpes infection? 

What is the rash like on his face? 

Although my son did have visual evidence of his Crohn's his biopsies all came back as negative for Crohn's as did his pathology post surgery! 

Sorry of the continued questions! 

Dusty. xxx


----------



## BoyMama2000

Great points Dusty.  I would pursue more work up since he is still experiencing symptoms. There are viruses that can live in the body for a long time and can never be diagnosed.  Then they go away and we never know what it was.  That being said, I think more work up can be done to look at autoimmune and immunologic reasons for his symptoms with Crohn's still as one possiblity.  Has he seen a rhuematologist as well as GI and endo?  That may be another angle to explore.  Best of luck and keep us up to date!


----------



## BsMom

DustyKat & BoyMama200 ~ I talked to the GI this morning and he said to stop the Tylenol and Advil since they really aren't helping much but to keep the Prilosec going twice a day. He did suggest us see a Rhuematologist. So, I talked to the Pedi's nurse and now waiting a call to see if they can find us a Rhuematologist or what else to do.

As for the postherpetic neuralgia and the original shingle infection I was wondering if that is still ongoing? I will bring that up when the Pedi's office calls back. Not sure if it matters or not but the pain is on the opposite leg than the shingles were on???

The rash is a bit on and off but, it is spotty looking a bit like Psoriasis but not exactly. It started on one side of his face and now on both sides. He says that it doesn't hurt or itch???

Keep you posted
Since my my husband just changed jobs our insurance ran out last Tuesday and won't have any until we get the COBRA paperwork sent in... When it rains it pours =(


----------



## DustyKat

Doesn't really fit with the postherpetic neuralgia then. I just hope that the original shingles isn't muddying the waters, if you know what I mean. 

It is common for the extra intestinal manifestations (EIM's) of Crohn's to appear before the intestinal symptoms (evidence) do and these can appear for a significant period of time prior to them as well. It may go some way to explaining, if he does have Crohn's, why he has rashes and joint pain but negative biopsies. Advil aside, the bloody stool would tend to indicate some large bowel involvement and EIM's are far more common when there is large bowel disease. I'm basing that on the bloody stool being red blood as I doubt it would be the Advil causing it, it would tend to cause the damage in the stomach and bleeding originating there would appear as a black stool. 

Perhaps as a suggestion, when he next has bloods drawn have them also test his B12, Iron Stores, Folate and Pancreatic Enzymes if they haven't been done at all or recently. 

I hope you don't mind me thinking out loud with a lot of this! 

Dusty. xxx


----------



## BsMom

DustyKat said:


> Doesn't really fit with the postherpetic neuralgia then. I just hope that the original shingles isn't muddying the waters, if you know what I mean.
> 
> It is common for the extra intestinal manifestations (EIM's) of Crohn's to appear before the intestinal symptoms (evidence) do and these can appear for a significant period of time prior to them as well. It may go some way to explaining, if he does have Crohn's, why he has rashes and joint pain but negative biopsies. Advil aside, the bloody stool would tend to indicate some large bowel involvement and EIM's are far more common when there is large bowel disease. I'm basing that on the bloody stool being red blood as I doubt it would be the Advil causing it, it would tend to cause the damage in the stomach and bleeding originating there would appear as a black stool.
> 
> Perhaps as a suggestion, when he next has bloods drawn have them also test his B12, Iron Stores, Folate and Pancreatic Enzymes if they haven't been done at all or recently.
> 
> I hope you don't mind me thinking out loud with a lot of this!
> 
> Dusty. xxx


Dusty ~ thanks. I am getting a copy of all of the tests that we have done so far this afternoon. I am having a time trying to get him into a Pedi Rhumy so far the soonest is March.... about to call two more now.

No, I don't mind at all thinking out loud :ybiggrin:


----------



## Tesscorm

Hi B's Mom - a bit earlier you mentioned that perhaps the Advil aggravated the symptoms...  for a sore back, my son had been taking ibuprofens on a regular basis (at times, as many as 10-15 per month) the winter prior to being diagnosed (diagnosed in May), I'd always believed that the ibuprofens had triggered the Crohns, however, his GI now believes that his sore back was an EIM and that the Crohns just hadn't shown itself yet.  My son seems to fall in with Dusty's explanation that often the EIMs show up before the Crohns.

Tracy - when my daughter was much younger, 8, 9 or 10, she had a cough that would begin in the fall and wouldn't let up until the spring, this repeated itself over 2-3 years.  A respirologist(?) had tentatively diagnosed her with asthma but wasn't convinced of the diagnosis.  We also saw an allergist who prescribed a medication (syrop) called Zaditen.  He explained that this wasn't a 'cough' syrup in that it wouldn't immediately alleviate the cough but that it would reduce the amount of mucous in her body and would eventually alleviate her cough.  It worked 100%!!!  I don't remember the exact amounts but remember she started on a certain dosage for 2-4 weeks and we gradually tapered her off.  Her cough completely disappeared, it did return a few weeks later but the doctor had instructed us to use the Zaditen again for a few days and again taper should the cough reappear, it again disappeared, NEVER to return!   If you haven't tried it, might be worth asking about...


----------



## BsMom

Tesscorm said:


> Hi B's Mom - a bit earlier you mentioned that perhaps the Advil aggravated the symptoms...  for a sore back, my son had been taking ibuprofens on a regular basis (at times, as many as 10-15 per month) the winter prior to being diagnosed (diagnosed in May), I'd always believed that the ibuprofens had triggered the Crohns, however, his GI now believes that his sore back was an EIM and that the Crohns just hadn't shown itself yet.  My son seems to fall in with Dusty's explanation that often the EIMs show up before the Crohns.
> 
> Tracy - when my daughter was much younger, 8, 9 or 10, she had a cough that would begin in the fall and wouldn't let up until the spring, this repeated itself over 2-3 years.  A respirologist(?) had tentatively diagnosed her with asthma but wasn't convinced of the diagnosis.  We also saw an allergist who prescribed a medication (syrop) called Zaditen.  He explained that this wasn't a 'cough' syrup in that it wouldn't immediately alleviate the cough but that it would reduce the amount of mucous in her body and would eventually alleviate her cough.  It worked 100%!!!  I don't remember the exact amounts but remember she started on a certain dosage for 2-4 weeks and we gradually tapered her off.  Her cough completely disappeared, it did return a few weeks later but the doctor had instructed us to use the Zaditen again for a few days and again taper should the cough reappear, it again disappeared, NEVER to return!   If you haven't tried it, might be worth asking about...


Thanks, it sounds like I need to find another pedi gi and get a second opinion. We do have an appointment with the pedi today, going to pick her brain and get her to call around to get hi in sooner with whoever he needs to see from here. Frustrating :frown:


----------



## BsMom

How often does Crohn's turn up to be Crohn's with a negative biopsy? What is EIM again, sorry my brain is on overload


----------



## Crohn's Mom

B's mom : extra intestinal manifestations (EIM's) 

Tess, thanks for thinking of JJ  I will definitely have bring that up to his doctor.  I think we have an appt coming up in the next 2 weeks or so.  I've always felt that his cough was some strange indicator of whatever is going on with him.
It's all so very frustrating :ywow:


----------



## BsMom

Crohn's Mom said:


> B's mom : extra intestinal manifestations (EIM's)
> 
> Tess, thanks for thinking of JJ  I will definitely have bring that up to his doctor.  I think we have an appt coming up in the next 2 weeks or so.  I've always felt that his cough was some strange indicator of whatever is going on with him.
> It's all so very frustrating :ywow:


Thanks googleing now


----------



## DustyKat

BsMom said:


> How often does Crohn's turn up to be Crohn's with a negative biopsy? What is EIM again, sorry my brain is on overload


I don't know the answer to that. In our case, and I would imagine the criteria required for a definitive diagnosis (via pathology) would be the same whether the pathology was done here or in the US, the negative result was based on an absence of granulomas. I have read that about 50% of Crohn's sufferers do not test positive for granulomas but it is certainly the clincher as far as pathology is concerned. In my son's case there was visual evidence and the GI diagnosed him on the spot following his scope but the pathology has never supported a diagnosis of Crohn's, he certainly has it though. 

Dusty. xxx


----------



## Tesscorm

Interesting...   I never did get the results from Stephen's biopsy, he was diagnosed by the inflammation or other indications that could be seen.  His GI came out of the colonoscopy, while Stephen was still in recovery, and told me that there was no question that Stephen had Crohns.  Duh, actually never occurred to me to ask specifically about the biopsy! :ybatty:


----------



## Crohn's Mom

Gabrielle had granulomas everywhere when she was 9 - from her esophagus to anus. Biopsies supported it. She wasn't diagnosed until she was 16 years old.


----------



## Crohn's Mom

Catherine said:


> Jj mom
> 
> Has JJ been tested for asthma.  Sarah only symptom of asthma was a cough which never went away.  Our test for sarah was to take ventolin, if cough went away was asthma.


Hi, sorry I missed this 

Yes, JJ has been diagnosed with "seasonal asthma" since he was 18 months old.  He had a severe case of pneumonia and was hospitalized in the ICU for about a week.  He was on a nebulizer 3 times a day for the next 2 years after that.  Then around fall season he would need his nebulizer again if he got even the slightest cold.
The chronic cough that he has had now for the last 5+ years sounds like a "bark" to us.  Even if/when he sneezes you can hear the "bark".  He was on 7-8 different medications at once for nearly a year when it first began, and no relief.  I finally decided to take him off of all meds because they weren't phasing the cough, and he seemed otherwise "healthy".  That lasted for nearly3 years straight, with only the occasional asthma treatment needed.  Then we thought it was gone, finally.  
It came back again last August/September and has stayed since.  I find it ironic that his cough came back around the same time as the stomach aches started getting bad with him.  I probably wouldn't put the two things together had his older sister not paved the way.  She had a chronic cough when she was 9 and we thought she either had asthma or a lingering cold for a month or so.  To my surprise that's when her pediatrician first suspected digestive issues because she was also very small for her age. (5th percentile at the time).  So knowing this, and where his sister is at in her disease at this point, I can't help but constantly wonder if JJ's cough is associated with digestive problems as well.  And now we know after his upper endoscopy last May that he has chronic inflammation in his esophagus, stomach, and the beginning of his small intestines.


----------



## Catherine

http://www.medicalnewstoday.com/releases/30012.php

The above is a link to article discussing that "People with Crohn's and Colitis at Greater Risk of Asthma, Researchers Say"

Hope this is of interest.


----------



## Crohn's Mom

very interesting ! Thank you ~ 
JJ also has psoriasis and has a tendency to get bronchitis, and just recently he's beginning to complain of "arthritis" type pain in his knee.  I know they all have to be connected some how.  I just wish the doctors would agree with me. :/


----------



## Crohn's Mom

Kinda thinking out loud here...and hoping for some opinions 

JJ seems to be getting "sicker" by the day lately.
It's hard to explain, but he's just not right.
Extreme fatigue, général un-well feeling, lower back pain, lower abdominal pain, and now more joint pains in his knees and legs.  He has absolutely zero energy it seems, and is napping after school daily and going to bed early. (His bedtime on school nights is 10, and tonight for example he has been in bed since 8 and that's with a nap from about 5-7 earlier).

Ok, so I put all that down again because I have been trying to take a step back from "Crohn's" thinking with him recently.  I try not to ask him "how are you feeling", or linger on asking questions when he comes to me with his complaints.  To know JJ, you would know that he is and always has been a bit of a "drama queen" as I call it LOL.  So, I thought I would try that approach for a while and try not to put "Crohn's" into his thinking for him.  Make sense ? I hope so lol.
Anyhow, so I would really like to think of other avenues as to what else could be wrong if it is indeed not Crohns ?  Any thoughts ? ideas? suggestions?
I already know that he has Psoriasis, so definitely probably auto-immune "something" with him. Or is it ? :sign0085:
Oh and, he has been on 2 dif inhalers for the asthma cough lately and they seem to have helped that.  

Brainstorm with me if you will....


----------



## lookame

*sigh* well I took lil Zach to an allergist today. The allergist found he had allergy cells in his nose smear and when he did the skin test he came out allergic to milk, egg, and peanuts an hes also allergic to dogs. So we get to elliminate milk products egg and peauts from his diet and see how he does. He also gets an x-ray of his head to check his adenoids. I was telling him about it and what he couldn;t eat and he started to get pretty upset lol poor kiddo. 

As for the test I'm rather confused. He had a sample test on day which showed an allergy to trees, cats and milk and now this test shows he allergic to dog, egg peanuts and dogs...but not trees or cats? He is only 5 so I guess that may have something to do with it? 

I did find it interesting that most of his allergies are food related... I'm a tad out of my element here...


Oh and Saturday night he had a bit of an episode...He had to go poop and while he was going he started saying "ow...ow...ow" then he started to cry. When he was checked on he was saying he had to poop because his back hurt really bad. No blood or mucous though but there was a large amount of stool. After that he was fine until a couple of hours later when he had to go again.


----------



## dannysmom

Has JJ been seen by a rheumatologist?  We've taken Danny for work-ups by GIs, rheumi, allergists, pulmonologists, endocrinologists, neurologists, .... still nothing though.


----------



## Crohn's Mom

No he hasn't Jeanne, but they may be a great place to start.
I had forgotten that I asked his doc about seeing one before and he requested that we wait.  Well, I've waited right ? LOL.
I'm not sure if we have a local pediatric Rheumi but I'll check into it!

Lookatme: I'm sorry about all Zack's allergies ! We are all too familiar with them in my house.  It seems between all 3 of my kids and myself we're allergic to everything there is!
It gets crazy trying to keep track sometimes !
Has he had anymore bathroom issues since you posted ? Is this something on going? or it jhas just recently started ? do you think he is a bit constipated and that's why it hurts more ? 
Sorry,,Im full of questions and no answers LOL.


----------



## lookame

Hey crohnsmom. Zach has issues with the bathroom he's had them since he was a month old. He scared me half to dealth when he started pooping blood at such a young age. He had several ER tests and it was determined he had trouble digesting milk protiens so he got put on some special formula which didn;t agree with him and he began throwing up constantly. Then he started table food and he was able to keep things down. We decided to give milk anouther go and he had terrible stomache aches and watery sewage like diarrhea(oh that was AWEFUL!) so we switched his milk to lactaid which helped a bunch and we also cut the milk intake down a lot. It helped. 

I always suspected something is/was going on just not sure what. He usually tells me his back hurts and that usually lets us know that he has to poop. Saturday was a bad day for him though. He seemed so traumatized. I don't think he's constipated though, he goes almost everyday and he drinks a lot. He seems incurably thirsty. He had anouther incident Sunday though which he started throwing up for no reason. He was watching a movie then said he had a headache and about half an hour later threw up. We gave him a bath gave him some soup then sent him to bed. Poor kiddo...


----------



## Crohn's Mom

Zack's history sounds remarkably like my middle son Austin's.  He too started with bloody stools at around 1 month.  He ended up having 2 colonoscopies before he was 4 months old and was treated with prednisone for nearly a year.  He was said to have "allergic colitis" and they said he was allergic to milk and soy.  So, yep, special formula and then the projectile vomiting ! HORRID ! LOL.  He was on that until he was about 10 months old and then I had a "theory".  He had never been given MILK so how could they be sure he was allergic to it ?? So I decided to try whole milk with him.  It worked like a charm and went off that nasty formula immediately.  Now a days (he's 17) he's a bit lactose intolerant but I still wouldn't say he's "allergic". 

I hate that we have to sit around and watch our babies in pain and discomfort and try and "guess" whats wrong and try not to over think and assume!
I hope Zack doesn't have anymore vomiting issues on top of everything else..that sounds awful 
Have you considered taking him to a pediatric GI for testing / scopes now ?
How old is he btw ?


----------



## lookame

Zach is 5 I've talked to his doctor and I talked to my gi and they both tell me to just jeep an eye out and see how he progresses. Last year though he only gained a pound...though he grew a couple of inches. Id like to her him in to a gi just to talk to gum and see what he thinks but I can't with my insurance. I need a referral and that requires a doc which listens to what I have to say. Oh well perhaps after eliminating the foods which we think are causing trouble things will settle for him. At least he's not alone in his allergies though, another boy in his class is allergic to all the things Zach is.


----------



## Catherine

Hi Guys

Your talking about problems with milk.

If the problem is lactose remove products high is lactose should help. And after 3 months they are usually be re-introduced and the person will likely have higher tolerance

If the problem is caesin? milk protein. You need to remove caesin in it many forms, caesin is used as filler in many products and goes by many names.

Be very careful removing caesin as if it is an allergy rather an intolence.  With allergy after caesin has been remove some people have a much stronger reaction each time they are some in contact with caesin.

Hope this helps


----------



## Crohn's Mom

Took JJ for his 14 year physical this morning.
The doctor charted his "growth" and said that he is only as tall as an almost average 12 year old!  
His weight however is in the 75%.  He started to try and talk to JJ about his weight and I immediately stopped him and said, he just needs to grow! JJ is not "fat" or even "heavy" in my eyes.  Yes, he does have some extra weight around his abdominal area; however, the rest of him is quite slim ~ except his face.  His face always looks "swollen".  Problem is, and I've stated it several times before, he BARELY eats ! The doc did say "it is quite unusual for him to have this extra weight especially since the rest of us are all thin".
So he sent us for a bone age X-ray and I have already taken him and had it done. Quick and easy 

Sooo....I have been brainstorming and of course researching LOL, and I'm thinking he has Hashimoto's Thyroid Disorder ~ It's an autoimmune thyroid disorder.  It would make perfect sense ! He is way short for his age, he is exhausted all of the time, he barely eats yet gains weight, frequent headaches, muscle aches/pains, dry skin, delayed puberty, "the face".  (some times he looks like he has a prednisone "moon face") and...dare I say?...a tad bit of depression ?  I have just considered this with him to be "overly sensitive".  In fact I believe I called him a "drama queen" in one of my earlier posts ? :lol: 

I did ask his doctor today if he had ever tested jj's thyroid levels in the past (I couldn't remember off hand) and he said no because we've never had a reason to, until possibly now.  I feel like once again that I am leading the doctor instead of the other way around! Oh well...whatever it takes right ! 

I have already called Arnold Palmer Childrens to make an appointment with a Pediatric Endocrinologist because, even if I am wrong about the Hashimoto's, JJ still needs to have a full work up to see why he isn't developing as he should.  They're on lunch break tho so I have to call back in an hour! LOL.
I am sooo hoping that I am right here ~ 
I mean I have already in my mind accepted that he has "something" autoimmune and I am sad for him for that, but oh my it would be such a blessing in disguise for it NOT to be Crohns !


----------



## Catherine

Hi 

I have posted tests that rachel had due to be short on the other thread.  Check with the males in family at what age they hit puberty.  My daughter hit puberty late around 15 but this is not late for my side of family.


----------



## Crohn's Mom

Thanks Catherine 

The Endo's secretary called back this evening and he is scheduled to go see the new doctor on March 27th ~ It would have been the 16th but I have to be at Gab's follow up appointment 2 hours in the opposite direction that day.  Tis ok tho! I was quite pleased, and surprised, how quickly we got an appointment ~ and they didn't even ask me for a doctors referral! 
Hopefully, we'll at least be on a new right track on figuring out what's been wrong with my lil guy all this time!


----------



## Tesscorm

Good luck!  It certainly sounds like you may be onto something!  Your kids are lucky to have you for a mom!! :thumleft:


----------



## DustyKat

DR T MD!  And I'm not being sarcastic either T! :lol: 

I hate that JJ is also having issues but thank god you are onto T, good on you! :medal1: Keep those bloody doctors on their toes! 

I too hope JJ doesn't have Crohn's, hell I wish he had a big fat NOTHING but I wish for answers more.  

Good luck T! 

Thinking of you mate, :heart:
Dusty. xxxxxxxx


----------



## dannysmom

Good luck Tracy! I hope they figure this out. The first 2 year that Danny has been sick he was also heavy around his mid section and face ... and everything looks swollen, even his hands. (He does not eat much either.) Dan's thyroid was supposedly normal tho. Please keep us posted!!


----------



## Crohn's Mom

Awe Jeanne, thanks ~ but that makes me nervous ! LOL


----------



## dannysmom

Hi Meredith,
Boy you have been through so much. Preschool kids can get Crohn's. We have some members in the Parent's forum with little kids too. Colonoscopy is usually done to rule out Crohn's. The FAQ thread below lists some basic tests too:
http://www.crohnsforum.com/showthread.php?t=22305

Good luck!
Jeanne
(Mother to Danny, 14, undiagnosed)


----------



## lookame

Well after 2 weeks of eliminating foods I haven't seen much of a differance with Zach. His nose is still stuffed up and he's still breathing out of his mouth. He hasn't had any potty issues though which is good(no crying before having to poo or during). I've started giving him vitamins which he enjoys *sigh*I just not sure what else I should do...


----------



## Crohn's Mom

Ahhh...so glad I have JJ's "history" in this thread ! I am about to leave for his Endocrinology appointment and I was trying to make a list of all of his symptoms for the last 2 years or so. I was having a hard time remembering it all, and then POOF, I remembered this thread and was able to just copy down what I need from here ! 
Less thinking for me is always a bonus  !LOL

Will let you all know what/if we find out today 

P.S....JJ and I just had an amazing 10 day vacation with just the two of us!! We are both so relaxed; I think it was just what we needed


----------



## Tesscorm

Hope all goes well today!  Glad you had a great vacation!


----------



## DustyKat

Damn, too late to wish you good luck! So how did the appointment go T? 

So fab to hear you had a great time! YAY! So happy for you hun.  

Dusty. x:heart:x:heart:x


----------



## Crohn's Mom

The appointment was relatively uneventful for the most part, but I''m still glad we went.  He said now was the perfect time to start checking into things before JJ's growth was stunted.  
He said according to his growth charts sent over by his pediatrician that JJ used to be around the 25 percent for his age group but is now only in the 5th.  I have to go and get him a copy of the actual bone age xray because he thinks they may have mis read it.  Report says he's about a year behind, but doctor believes it's probably more like 2 plus.  Also, whereas JJ's pediatrician has been saying for nearly a year that JJ has "started" puberty but is just going slow, his Endo said that he hasn't started at all, and that's actually even better news in relation to his chances of growing. 
So basically we have to go and get a bunch of bloods drawn and wait on those results to come in.  If the results look ok, then he wants to just give him a few more months to watch and wait and see if things change at all.  If the results are abnormal than he will have us do a 4 hour hormone test, or something like that. ;P
I am just pleased to know that his growth hasn't been stunted yet at all.
I still have no idea whats going on with him to cause these delays, but hopefully something more concrete will show up sooner than later


----------



## DustyKat

Thanks for the update T!

It's so good to hear you have a plan action hun and also fab to know that if there are any issues, hoping there aren't!, then you are at the early end of it. You are doing a damn good Mum! Kudos to you! 

Dusty. x:heart:x:heart:x


----------



## kandjmom

Hi everyone! I posted a couple of months ago about my 10 yo DD who was having tests done to rule out Crohn's. I just wanted to update because it may help others struggling with diagnostic issues. Her GI ruled out Crohn's, Celiac and most other GI issues but my DD was still feeling horrible (constant stomach pain, weight loss, fatigue, insomnia, etc.). She's unable to go to school and was so depressed that we didn't have an answer. The GI doc basically gave up and said it was probably Functional Abdominal Pain. She wanted her to see a therapist and go on anti-depressants. I knew this wasn't right so we went to see a pediatric diagnostician. One look at her records and many questions later, he immediately honed in on a diagnosis of Dysautonomia/POTS. He started asking her all sorts of weird questions I never thought of, and it turned out she was feeling dizzy, light-headed and faint every time she got up. He took her heart rate lying down then standing up and it went from the 80s to 130s! This is the hallmark of POTS (Postural Orthostatic Tachycardia Syndrome). It's a dysfunction of the autonomic nervous system and can cause major stomach problems. Why our GI doc didn't suspect this I'll never know.  Anyway, she just started on a med that will increase her blood volume and hopefully help her to feel better. It may be a long road but at least we know what we're dealing with.

I post our story just so others know about this rare illness just in case it may fit your child's symptoms too.  Never stop advocating for your child!  Good luck to all.


----------



## Tesscorm

Hi Kandjmom,

I'm glad you finally have some answers and hope that her medication will help her as quickly as possible.

Just thought you might be interested in knowing that there is another parent member here who's daughter also has dysautonmia.  Member name is imaboveitall - Julie, her daughter is Violet.

All the best to your daughter! :ghug:


----------



## imaboveitall

Kandjmom, yep Violet has POTS also.
HR went from 84 to 128 when going from sitting to standing at doc's office, diastolic BP drops to around 30, it has been so low I cannot get a reading at all.
She has insomnia and sleep disturbance unless she takes her cyproheptadine at bedtime, it also eliminated the a.m. dizziness.

She also has heat intolerance, (overheats very easily), temp dysregulation (temp is often as low as 94 and is usually 95, never higher unless feverish, a fever for her is 98), mottled hands, sweaty palms, hyperhidrosis (has to use the strongest antiperspirant available), pooling of blood in legs, hemifacial flushing (bright red/hot patch on one cheek), exercise intolerance, orthostatic intolerance, olfactory hypersensitivity, migraines, prob more I am forgetting. Feel free to PM if you want to talk more about it. :hug:


----------



## dannysmom

Thanks for sharing. Is the medicine florinef?  Has your daughter had an endocrine workup to check her adrenals?

(I've read quite a lot about POTS over the years, as my older son had this as a symptom of another problem he had.  I never did the heart rate check on Danny ... am going to now)

Thanks again. Hope your daughter feels better!


----------



## kandjmom

Yes, the med is Florinef...just started today so we'll see if it helps. She's also on melatonin for insomnia, which has definitely helped, and Levsin when her GI system is cramping. She hasn't had an endocrine work up yet but all of her other blood tests are normal with the exception of a positive ANA and Sjorgren's (which the rheum said was a false positive).

The heart rate check is pretty easy to do yourself. I found a great heart rate app on my iPhone which I use to keep track of hers at home. A more official way to diagnose is a tilt table, but my DD's heart rate issue was so obvious the doc didn't feel the need to do more testing.


----------



## imaboveitall

V had an endo workup at my request. Her cortisol is always the lowest end of normal or just below.
Endo ruled out Addison's though.
Florinef didn't help Violet, but salt loading does. 
Her ANA was neg.


----------



## leah

Hi everyone. Still at a loss with doctors, They do not believe my little one has crohns or any other ilness/disease. which i hope not but i believe she has, Deep down you know when there is something wrong with your own child & they just said she is chronically constipated. From the start my little one from birth always had problems with her bowel either been constipated or loose and also with keeping baby milk down. They put her on gaviscon but didnt help, She had tests for dairy & lactose intolarance which came back positive, So she was on neocate till she was 12months old. She was also on movicol from around 12-18 months old. This has never helped her. In the past year she has become really badly constipated and has been in hospital several time from collapsing in pain with her stomach. She is prone to getting urine infections, She was admitted to our local hospital by our paeditrican i dont think he believed movicol, lactoluse or dulcolax had not been helping her, So we spent one week in our local hospital which proved to them medication was not working, They did no tests on her at all then kept her on movicol(which does not help at all) & also dulcolax, Twice more she collapsed & i took her to A&E they started giving her enemas once a week which were so destressing for her. These would get rid of a little bit then back to just staining her pants. So they referred us to a specialist at our childrens hospital..She went into local childrens hospital 5 weeks ago now, She had an x-ray done which showed she was really badly compacted with poo in her bowel. So they admitted her to a ward to de-compact her which they did this by clean prep, She was in hospital 3 days had another x-ray before they discharged her which showed she had some poo left but majority had been cleared out, They told me to keep her on 4 sachets of movicol & 5ml of senna 4 times a day. She had that much clean prep it was coming out till 2 days after we left hospital. She had diorrheoa for 2 week.. Then 2 week after and she started having problems going to the toilet again, I have been giving her all her medication religiously to try and keep her regular so she doesnt block up again, Then they concider looking inside with the camera. (This i am going to demand). Still 5 nearly 6 weeks on she is struggling to go it has been a week since her last decent poo, She is complaining of stomach pain again & it has started to swell up. I have rang the hospital 5times in the past 3weeks to ask for advice all i got was up the medication to 5-6 sachets of movicol(which do not help her in anyway been on this 2years) & senna which is i think griping her. she is 3(just) and is at the age where she doesnt want to do anything she doesnt want too so it is hard getting the amount she was on down her nevermind more. I dont think this is right to be on lots of medication. Im at the end of my tether with it all its making me so upset for her but doctors will not listen at all in there eyes its 'just' constipation i dont think that is just it at all but hey im not the one with degree lol. My second cousin's little girl has just been diagnosed with colitis they said at the hospital they may have the same. I just want to know how people got diagnosed how long it took & what the symptoms are like in children. Sorry for the really long essay lol any info is so much apprecicated


----------



## Tesscorm

Hi Leah,

When the medications haven't been working and you've had repeated trips to the hospital, it's hard to understand why the doctors haven't been more proactive in looking for the cause!  Poor thing, it must be so difficult for her and you!  

As your cousin's little girl has been diagnosed, is it possible for you to get a referral to her doctor?  This doctor will be familiar with the family connection and is, obviously, open to the possibility that the symptoms may be more than _just _constipation.

Something you might ask your doctor about... when my son was much younger, he would sometimes become constipated.  His doctor suggestion glycerin suppositories.  They worked amazingly well and quickly (and I don't think they would conflict with her current medications but ASK!).  And, while my son didn't like them, he never complained that they were painful.  The on/off issue with the constipation lated for about a year to two.  Although my son was diagnosed with Crohns last year, at 16 years, I don't think his earlier problem with constipation was related - I think it was him 'holding it in' so he didn't have to stop playing and his diet.

Good luck.


----------



## leah

Hi thank you tesscorm, I dont understand why not either but they are supposed to know what they are doing. We are back on the 26th april so i will definatly be pushing for more tests and thing, But they dont seem to want to help me. Thanks for writing back apprechiated


----------



## Tesscorm

Good luck at your apptmt! :ghug:  I hope you get some answers!


----------



## Crohn's Mom

I haven't updated in a while so thought I would 

I got a call about JJ's blood results.  Here's the interesting part...His pediatrician ordered very similar bloods as the specialist, with a few different ones between the two.  Both doctors got results of all bloods.  Pediatrician decided all blood work was "normal" and if I wanted to discuss them in detail I could come in for an appointment.  Endocrinologist called me personally (not a nurse) and said that his blood work is NOT "normal" ~ not overly abnormal, but still abnormal. :shifty-t:
So JJ is scheduled for a 4 hour growth hormone test  on June 22 for further investigation into this issue.
This would be exactly why I decided to take it upon myself, once again, and ignore his pediatrician and take him to the specialist myself ! 

His symptoms are still basically the same.  We have stopped the gluten free diet as we didn't see any "real" improvements ~ I thought it was helping with his stomach aches, but that didn't last.  He has been back to regular foods for about 3 weeks now and still feeling the same.  Only difference lately is he is losing weight for some reason.  I'm not sure if its from eating so little for so long thats finally catching up, or what, but it's a noticeable weight loss.  I'm going to try and get him weighed soon, but Im guessing it's nearly 10 pounds or so within the last couple of weeks.
Could this weight loss be a sign that puberty is finally starting ? Any thoughts ? I'd rather think of it as a positive, than think that it's just another sign of possible Crohns. :yfrown:


----------



## Farmwife

That's interesting about the gluten free diet. We did the same thing for Grace and we thought it did help her stomach pains. Of course, 4 mo. later she had the worse flare up ever and the diet didn't seem to be working any more.
 Which is a good thing! Grace loves her cinnamon rolls.:thumleft:

Sorry I don't know much about boy's puberty. I do know my dear mother said when my brother went through it was "when he speaks he goes from 
Ms. Piggy to Barry White"!:rof::rof::rof::rof::rof::rof::rof::rof:

:soledance:Farmwife


----------



## DustyKat

That bloody paediatrician! Did she get her degree from the back of a Corn Flakes box! Grrrrrrrrrrrr. 

I don't want to be devils advocate! (((pouting here T!)))

Ten pounds in two weeks seems excessive to me mate. I'm not saying it isn't puberty but I think you would tend to see a shift of weight IYKWIM. Looks thinner but gains height. 

Keep us posted! and above all else good luck!!!

Dusty. xxxxxxxx


----------



## Tesscorm

Good luck Tracy!

Have you noticed that he's eating less?  I'm wondering if he's having pain while eating or avoiding a 'larger' meal to avoid pain - could be contributing to the weight loss (especially, as you said, it seems be after he stopped the gluten free diet).

I hope you get some answers after the June testing.


----------



## Momto2girls

Hi ladies! We are undiagnosed, too! I am not sure I want a diagnosis, but I'd sure love to know what is going on!? Our main symptoms are constipation and diarrhea, and tummy aches all the time! She also has reflux and food allergies, and overactive bladder that worsens with constipation. Her scope showed inflammation of the ileum and right colon but the GI doc doesn't think it is Crohn's -- or IBD at all? Does anyone have any ideas on what it could be besides IBD? They say it isn't Celiac or EoE -- they don't know what it is?? She's now taking Sulfasalaine on top of everything else. She's not getting better -- she might be getting worse. Anyone??


----------



## Crohn's Mom

HI Mom, 

Has Gracie had any other tests done besides the colonoscopy/upper endoscopy?
Like a Barium xray, CT scan, MRI (MRE), etc?
I wouldn't just accept a diagnosis of HPylori with out further testing, especially since there's inflammation involved.
I think I have asked before but not sure, ~ was the inflammation chronic or acute ?

When she starts to show signs of being impacted do you go to a liquid diet for a day or two to see if that helps any?


----------



## Momto2girls

Hi Crohn's Mom! Let's see -- she has not had ANY of those tests!?!?! What types of things would those help with?? She's had several x-rays to look for constipation -- and that's how we've been able to see the impactions. She's had bloodwork and we've done stool cultures -- so no (other) infections were found. 

I've not ever been advised to do a liquid diet for a day or two!? But, I'd love to hear more about that as I'd love to do something to help avoid another "clean out" -- what do you suggest?

The other thing Gracie has is extreme thirst. She's SO thirst ALL of the time but it gets even worse when she's really feeling badly. Don't know what that could be? And random joint pain here and there??

ETA: the inflammation was acute in the ileum and it was cryptitis in the left colon (didn't say acute or chronic) -- the pathology mentioned neutrophils (ot something like that).


----------



## Crohn's Mom

Well the colonoscopy can only see part of the small intestines, so there's plenty more bowel left that needs to be examined to be sure that she does not have Crohn's.  These other tests would help to visualize the remaining bowel and look for other things such as scar tissue, strictures, ulcers, etc. 

A liquid diet would just be similar to a "clean out" for a colonoscopy; minus the dreaded prep.  In essence it would help her bowels to rest for a few days without adding any addition solid foods  that have no where to go for the moment, and hopefully allowing her to empty more and reducing the pain.  Tesscorm knows a lot about EN (enteral nutrition) and could probably recommend some good supplement drinks so that Gracie is still getting some nutrition while not "eating"; such as Boost drinks or Ensure.  Hopefully she can jump in here and help recommend something to try  It does help Gab to do liquids for a bit when she feels "impacted".

I don't really know what to say about the extreme thirst??  Someone help me out here 

The random joint pain could be an EIM of IBD if she does indeed have Crohn's.  There is a subform for EIM's here (extra intestinal manifestations ) so maybe have a look around there as well.

Acute inflammation means that it has basically been a recent thing in her body.  Which, could be a "good" thing because it's not "chronic" so hopefully it won't become that way and maybe it really is HPylori causing the problems from a recent infection ? (we can dream right ?  )

Tess : Yes, JJ is eating very little lately.  I do believe it is because of a somewhat unconscious fear of pain when he does eat  He claims to be hungry, very hungry, and then barely eats.  Poor kiddo should be eating me out of house and home at 14 years old; instead he's eating maybe the equivalent of a sandwich a day. :confused2:


----------



## Farmwife

Momto2girls,
My Gracie has joint pain in her r. knee and lately her left also. She also get's weakness on the right side of her leg. The pain is increasing so I will be giving Tylenol to help. She can go days or weeks without a problem. Not lately though. My doc asked me about if she was thirsty and I said YES. He made sure kidneys were working.   
Overwhelming  thirst can be a sign of kidney issues.
Farmwife


----------



## Tesscorm

Momto2girls,

EN is certainly something worth looking into!  As a treatment for Crohns, it can be as successful as steroids at inducing remission, has NO side effects, has anti-inflammatory properties and provides nutrition in an easily digested formula (allowed bowel rest).  It usually requires that the formula replace all foods for a period of time (six weeks for my son) and then regular food is gradually reintroduced.  For some reason (perhaps cost and/or patient compliancy), it is not as commonly used in the U.S. as it is elsewhere; in Canada, Europe, etc. it is often the first treatment option for children.  However, as I said, it is not easy to eliminate all food for that long a period and, my understanding is that, it is most successful at achieving remission if the Crohns is located in the small intestine.

However, even if used NOT as the sole treatment, it can still help in alleviating symptoms through the bowel rest and provide nutrition.  There are a number of formulas available - Modulen, Peptamin, Vivonex (or a similar name???), Boost and Ensure - at least some, if not all, are available without a prescription (although a prescription may help get insurance coverage??).   I don't believe that the Boost and Ensure have the exact same formulation as the others (something to with how certain components are broken down???) but some GIs do use these shakes for EN, they are easily available and may taste better (allowing better compliancy).

Look through the Enteral Nutrition subforum under Treatment, there are lots of threads in this forum re En, in particular, one thread was started called Kids on EN (this subforum) which will provide you with more info.

Good luck! :ghug:


Farmwife - Twiggy930 's son was also having leg pain - I'm not sure if they've determined the cause or treatment but, if she sees this, she may be able to offer some suggestions...


Tracy - maybe JJ could try the shakes as well???  Even before Stephen was sick, I sometimes gave my kids the Carnation breakfast shakes (with their breakfast).  They used to find them a bit 'thick' (and probably too filling with food), so I used to split one shake between the two of them and dilute it with milk...  They assumed it was a 'treat' having chocolate milk for breakfast


----------



## crohnsinct

YUM!  Carnation Instant Breakfast - Love those!  

O was also VERY thirsty prior to dx.  Doc  said it was because she was dehydrated.  Something to do with the inflammation and not absorbing enough fluids?  I thought it was just from the diarrhea but he said also not absorbing.


----------



## Momto2girls

Thanks for the AWESOME info...especially about EN -- I figured it was some fancy by prescription only thing! But that's great you can just get it and try it!

Crohn'sMom -- It is interesting b/c Gracie will almost self-regulate to a liquid diet I've noticed -- when she's not feeling well she only wants noodle soup! 

Crohnsinct -- Crazy that your daughter was super thirsty as well! OMG, she is always wanting another drink! Which they say constipated kids don't drink enough but that is for sure not the case here. 

So Gracie had an xray and she's not constipated or impacted -- yay! But, she had blood in her last two stools.  What does that mean!?!!?


----------



## Twiggy930

Hey there.  Sorry I'm so late getting to this.  I have gone back to work :yrolleyes:

My son has had leg pain for about 3 months now.  The pain is in the front of his upper thigh in his left leg.  It is so bad he has been unable to bear weight on it for 3 months and has been getting around on crutches.  We have had an x-ray of it and gone to a pediatric orthopedic surgeon.  They didn't find anything wrong with the bone.  The GI thinks it is probably Crohn's related and the physio thinks the origin of the pain is the sacroiliac joint in the hip.  We have been referred to a pediatric rheumatologist but the appointment (earliest available) is in OCTOBER!!!  We have been going to a physiotherapist and doing the exercises they have recommended and have been trying to do some swimming as a way of exercising the leg without too much weight bearing.  Unfortunately the last time we went he accidentially kicked the wall of the pool and broke his foot!!! :hallo3:  I wish I had more advice about the leg pain.  It is one of our biggest problems right now and no one seems to have any solutions.


----------



## Farmwife

Thanks for the reply Twiggy930
   I'm starting to get worried about Grace. When her knee/leg starts to hurt. She can't hardly walk. Her dad twice had to carry her out of a store.
Have you or anyone had a problem with EIM flaring up after a BM.
Grace finally had her BM. Her knee and belly started to act up. 
I would think she would feel better after not having a BM for 4 days.

Farmwife


----------



## Crohn's Mom

Twiggy, has your son had a CT scan done to check for an abscess ?


----------



## Twiggy930

He has had a MRI and nothing was found.


----------



## poppets mum

Hi everyone. I am new to this forum but it looks like an amazing place to receive advice and support. I think anyone dealing with this is so incredibly brave. Anyway I have a 9 year old daughter Amy who two years ago exactly was admitted to Hospital with an abscess in her small bowel. Luckily it was able to be treated with Antibiotics and 6 weeks of enteral nutrition therapy via NG tube. At the time her GI specialist was convinced she had Crohn's disease. But scopes came back normal (yay) and we went on our merry way. The past two years have been fairly uneventful, just the odd tummy ache. 
  Well lately she has been dealing with constant tummy pain that was put down to constipation. This is finally clearing up but stomach pain is worse than ever. For some reason it seems to be agony when ever she eats anything,  and she is trying not to eat at all. We are 6 weeks dealing with this now and she finds it hard to do most things including bending over, any physical activity and even sleeping. So far she has had an x-ray, ultrasound and various blood tests. The x-ray was the only thing showing the constipation, but the last one showed it to be just about cleared up. She has lost about 6 pounds during this time and is at the point where she screams as soon as the food seems to hit her stomach. Oh and she is always complaining of constant headache, also I was wondering if anyone else had been through anything like this or have any ideas what it could be?:sign0085:
Thanks for listening.


----------



## Catherine

Time to go back to gi.  My daughter dx with crohn's in January, also had a xray showing constipation.  Hope its  not crohn but it sounds very like Sarah symptoms prior to dx.


----------



## Momto2girls

We are undiagnosed, but my DD battles constipation with impaction as well. We've had 2-3 xrays showing impaction -- up to every 2 weeks. My daughter is 4 and her scope showed inflammation but no damage to dx Crohn's. But, they started her on sulfasalazine and it seems to have helped the constipation some? At least when we had an x-ray last week she was not constipated. But, the next day she had blood in her stool, so who knows what we are dealing with now?


----------



## Tesscorm

Poppets mom - It could be that she does, in fact, have Crohns (as her GI initially suspected) and that the antibiotics and EN put her into remission (or close enough to be mainly symptom-free) for the last couple of years and she is now having a flare.  I would go back to the GI for tests.

Twiggy - so sorry to hear about your son's foot!  As if it weren't enough that his leg is still hurting, now he has to deal with a broken foot.   Has the physio helped at all with his leg pain?


----------



## Farmwife

Hi, I agree with Tesscorm.
  My 3 yr. old Grace is undiagnosed. About a year ago she went through a 4mo. period of NO symptoms. Ya!!!! We thought she was cured of what had been ailing her since she was 6mo. old. However, it came back worse! 
   So your DD in could be in a flare up. I've learned here that "normal test" don't always show the truth. Keep PUSHING"


Farmwife


----------



## poppets mum

Thanks for your replies Catherine,Tesscorm,momto2girls and farmwife. Just heard from the GI clinic, and they can squeeze her in for an appointment tomorrow:ybiggrin: Really hoping they can come up with something for this poor miserable little girl. I hate it when tests come back normal but you just know something is really wrong. I have the feeling they'll try to give us the catchall IBS diagnonsis.:boring:
  Farmwife do they plan to run more tests on your little one? I certainly hope so. mom to 2 girls blood in stool isn't always a cause for concern but is definitely worth getting checked out. Apart from constipation is your daughter having other issues? Good luck to anyone dealing with this crap, (haha) I know as a parent how worrying it is.:wink:


----------



## Momto2girls

Poppets Mum -- You know, we started with tummy issues with Gracie about 1.5 years ago -- she was doubled over in pain -- the very first time I thought it might be her appendix!? Then after a while I started to notice a pattern of the pain with potty accidents, and we had her tested for UTIs -- and she was fine. She had frequency but she her blood sugars were (mostly) fine as well. So we went to urology and then nephrology and found out it was constipation causing her bladder spasms and we sorted that out with miralax, and some dietary restrictions. But, over time it got worse, and now she's more severely constipated even with meds, constant tummy aches, lethargy and D. She wasn't sleeping at all until we started the prevacid which has helped! We have a lot of IBD in our family history and so the GI doc scoped and found inflammation in the ileum and left colon but said it wasn't Crohn's. Also, she has H. Pylori/Gastritis but I am still unclear on how that effects this whole thing.

We go for a follow up tomorrow morning. B/c the bleeding has stopped I think I might opt for no further testing for now and see how she does, but I still want to hear what they have to say.


----------



## Momto2girls

SO since we are as of yet undiagnosed, and our follow-up appt is tomorrow -- our first appt since our scope -- what would you all recommend I ask for? I know Dusty mentioned MRI, CT Scan, Ultrasound? Should I re-do her bloodwork from early April? Or is it too soon for anything to have changed? I will be talking to them about switching docs, so maybe some of this stuff can wait for the new doc? 

You all have been so helpful! I just want to make sure I ask for the right things when I go in.


----------



## crohnsinct

Momto2girls:  since she had inflammation on scope I would want blood drawn again to check inflammation markers...maybe stool tests for inflammation as well.  Just a few quick thoughts.  Hopefully the experts can chime in here.


----------



## Momto2girls

Thanks crohnsinct -- as far as you know, inflammation markers can change over the course of two months? It kind of threw me off when the doc said she was calling in blood tests "even though everything was normal in early April."


----------



## crohnsinct

Hmmm I am no expert in kids as yet undiagnosed but O's numbers changed significantly(docs words not mine...he doesn't readily share numbers..would have to if I asked but I rather like not knowing...just the facts) over 6 weeks while on Remicade so if your daughter had inflammation and maybe has IBD I would guess that inflammation can change.  Plus if it goes down that would be comforting to know. 

Good Luck!


----------



## DustyKat

I would definitely have the bloods redone. Depending on what is happening they have the capacity to change very quickly either in response to disease/infection and so on or in response to treatment.

Dusty. xxx


----------



## Momto2girls

So we did have bloodwork done and we have the supplies for more stool cultures. So we'll see what they say? We are switching docs and we see our new doc at the end of the month. So whew, at least that is behind us. She said bloodwork would be in today or tomorrow so I'll keep you all posted!


----------



## crohnsinct

Sounds good all around...hope you get a call with results faster than me:ymad:


----------



## Momto2girls

Oh I'm sorry you still haven't heard. I hate that. Grr.

I sure hope I do too. We talked a lot about the problems we've been having with communications and she asked me to tell her manager about it -- they've had several families dissatisfied with it all. So at least I am not the only one!


----------



## Farmwife

I guess I'll post this question here. 
Grace had BAD knee pain that woke her up last night.
I was wondering if any of your children have or had knee pain that would come on suddenly, last a couple minutes and then leave for a couple minutes, then come a couple minute, then leave for a couple minute and on and on and on....
It reminds me of her abdominal pains. However it's in her knees no where else.
:hug:Farmwife


----------



## Suzysu

I think Freddy gets a similar pain in his hip - comes and goes - seems bad when he has it (screaming etc). Referred pain maybe? I don't know? Did you mention her joint pain to her GI? maybe you could ask when they phone you tomorrow? Hope she has a better night tonight xx


----------



## DustyKat

Sarah use to complain of knee pain. It wasn't there all the time, more of a come and go thing. I put it down to "growing pains"! Ha, how wrong was I! :yfaint: 

Dusty. xxx


----------



## Momto2girls

I know this is probably totally unrelated, but Gracie's had a really sore belly button -- it is red and swollen under the belly button and seems very painful for her. She's woken up the past two nights. I just thought since you all seem medically knowledgable maybe you'd know what it is?


----------



## DustyKat

With it being red and swollen infection springs to mind. Is there any smell or discharge? 

Dusty. xxx


----------



## Momto2girls

Dusty -- there isn't any smell or discharge at this point. I thought infection, too...like maybe a mix of dirt and sunscreen and chlorine or whatever from the pool? But, it is REALLY bothering her? I'll see how it looks this morning and might need to take her in? Hmmm...


----------



## DustyKat

If it is no better I would have it seen to particularly as it is bothering her. It could be either a fungal or bacterial infection but either way they should be able to give you something to clear it up. 

Good luck and let us know how you get on. 

Dusty. :hug:


----------



## Momto2girls

Thanks!  I think I will call later this morning and see if the nurse thinks there is something over-the-counter that will work or if they need to see her?


----------



## SarahAnne

I won't make this long, but my 9 year old son has had "issues" since he was a baby. Nothing serious, nothing to point directly to IBD, but having it myself I watch things closer.

Past couple of years we've had a few episodes of tummy issues, he never says it is his stomach, it's always his waist. He says the pain is like someone stabbing him in the waist (he always points to his belly button area).

He goes to the bathroom frequently, I know that he has bouts of diarrhea but he won't discuss his bathroom habits with me. I have even heard him whimpering or almost crying through the door but when I ask if he's okay he always says he's fine. I've asked him about blood but he says he's never had any.

A few days ago he had a really bad bathroom experience, he actually called me in there. He was bent over on the toilet, crying and shaking, sweating and in so much pain I felt like going crazy. I gave him a cold washcloth, some tylenol and hated that there wasn't anything else I could do. He laid down on his bed in the fetal position just crying until he felt sick. He threw up, a lot but the stomach pain stayed for at least another 45 minutes. 

After it was all over, he told me he was fine, he didn't need to go to the doctor. I know that he is deathly afraid of shots, needles, and anything to do with the hospital, partly because of my experiences and a few (non tummy related) of his own.

I don't want to be a crazy mom, demanding all sorts of tests because I have Crohn's but I am really getting concerned. His "issues" seem to be following the same sort of pattern that my disease did, small flares I hid during childhood, up to when it got out of control in middle school when I was being bullied and under a lot of stress for a little girl. 

Should I just visit with the pediatrician, explain everything and ask for bloodwork? I feel like a really bad mom, I haven't had current bloods on him in several years because of the needle anxiety. 

Does anyone understand? I really really don't want my son to be sick. But I will die inside if he is having issues and I'm standing by doing nothing because I want it to be nothing. I feel like I am driving myself crazy. I know it isn't my fault, but I can handle having Crohn's. I don't think I could watch my son go through even half of what I've been through. I don't know how you amazing parents do it.

Help!


----------



## happy

SarahAnne,
I do have some experience with this type of situation. If you read an earlier post by me on this thread (#93), you will read that my son had some problems at the same age and that he was also needle phobic. 

I was not forceful enough earlier on in getting the diagnosis and treatment that he needed because medical friends and family kept saying, "oh he's fine, just skinny...eats cake at our house, etc." He would also soon forget the pain and symptoms as soon as an episode passed. When asked at the doctors if he had any pain he would reply, "No", even though he was writhing in pain on the couch the whole day before! :ybatty:

We used an Emla creme and some Ativan to finally get some blood results that would support how ill he was. I am sure glad that we did. That is what finally got us the help.

I sure hope that your child does not have a chronic illness, but I would encourage you to get the investigations done that you think that he needs. You and he have every right to have the medical staff prove to you that it is not an IBD, and then, if it is not, for them to help figure out how to help him.  

Although my son has been healthy since that time and plays lots of sports, he is still very thin and I watch him like a hawk if he complains of any 'tummy' or fatigue issues. I am sure that it is like this for anyone with these types of problems in their family.

:goodluck:


----------



## SarahAnne

happy ~ Thanks for the reassuring words. My son does not fit the "typical" (haha, I know right) look for a child with IBD. He is a little shorter than average, as I am and his father is. He is also built like his natural father, kind of stocky. He definitely isn't thin, he's not fat either. 

I wondered about the blood work. I asked my mom (used to be an RN before she had to stop working b/c of her fibro), and she said that they probably wouldn't give him anything to calm him, but they might use lidocaine to numb the area. I'm convinced he will have a panic attack if he even sees a needle.

He has a pretty decent appetite, but he is also very picky and funny about food. He eats pizza, but he doesn't care much for the sauce or spaghetti sauce as it "burns" his mouth. He drinks a LOT of milk. He would probably down a gallon a day if I didn't set restrictions on it. 

Thanks again. I'm going to set up an appointment with the pediatrician. We only have one pediatric gastro in my town, he is very hard to get an appointment with but I imagine the peds office could arrange it if it is necessary later. We saw him once in emergency a few years back when my son swallowed a quarter and we had to have the damn stuck thing removed by endoscopy. I am desperately hoping that this is all nothing. I am trying to forget all of the random, small things that happened when he was a baby that I keep trying to make connections to my Crohn's. 

I feel like my mind is in a whirlwind. I guess it doesn't help that this is all happening as am I just starting a small course of prednisone. When it rains it pours.


----------



## happy

SarahAnne, It is natural that you are concerned and a bit anxious. I can also tell you from  my own experience that the anxiety about it only makes it worse and makes the doctors focus on you and your anxiety (ie. worried mom about non-sick child) rather than on the possibility that your child may in fact be ill. So take some time to think about the worst "what if" scenerios and then calm yourself and be matter-of-fact with the medical people. They will take you more seriously this way and you will save your energy rather than spending it on the worrying. I know that this is not easy to do. :hug:


----------



## Farmwife

Hi SarahAnne,
 Welcome to the forum.:hug:
My little Farm girl Grace is three and were going through the process of her being diagnosed. Her symptoms go all the way back to 6mo. old. We've been dealing with her pains for a long time. I know what you mean about not waiting to seem crazy about what their going through. For years I listen to my doc and others tell me their hopefully grow out of it. Believe me I had hoped they were right. Sadly her symptoms got worse and more numerous till I had enough. Imagen trying to tell a three year old why she's getting poke with a needle by a stranger. So far she's taken it like a trooper. Last time she didn't even cry. I was proud. I wanted to cry but I didn't. I'm with you son I dislike needles.
You know whats normal for you son. You know more than most about the dangers of untreated crohn's. You know what your young man needs. If he is or gets to the place that you and or he has has enough you'll now it. However their is a stool sample test that can be preformed to measure inflammation. That's easy enough. No needles.
I do hope he gets well. You found the right place. Plenty of parents here have been in you place. Welcome again to the forum.
Farmwife


----------



## Suzysu

SarahAnne - I really feel for you and know what it is like constantly worrying about your child and not knowing what to do - My now nearly 2 year old has had chronic vomiting and diarrhoea since a few months after starting solid food, he has had periods of weight loss followed by gain and because of this the Drs were unwilling to do much, even when he developed iron deficiency anaemia, mouth ulcers, blood in faeces and bleeding round his bottom. I worried like you that it may be something serious but also I didnt want to put him through lots of tests if he didnt need it.
  In the end he had all the tests including endoscopy and colonoscopy - I cant pretend it wasnt awful - it was - all the tests came back ok - and I thought I would feel bad for putting him through it all - but I am glad I did it as now we know it is nouthing too serious we can concentrate on getting him better and on with the rest of our lives. If all the tests had come back possitive it would have been terrible but at least he would be in a better position to get the treatment that he might need.
  I feel I am rambling now!!!! - I just wanted to say I know how you feel - good luck - I will be thinking of you and your boy xxxx


----------



## crohnsinct

SarahAnne:  I definitely feel for you.  I can't imagine what it must be like watching your child and suspecting he has IBD when you yourself know first hand the pain and suffering involved.  You are 100% right in bringing him in and having him looled at and tested.  Even if it isn't IBD it is something and the poor thing should get  relief.  Farmwife had an excellant suggestion with the stool testing.  Maybe just do that first although I am sure the ped will want to do a whole panel.  

I am sorry you and your son are having to deal with this.  Excellant advice from Happy also. Good luck and keep us posted!


----------



## Jmrogers4

SarahAnne, my son and husband both have Crohn's and it is really amazing to me they are in the same location, have the same symptoms during attacks.  While it is certainly hard to have a child with Crohn's you want to fix it but you can't.  I think for my son who has certainly seen his father go through some Crohn's related stuff.  He was really scared at first (he was dx at 10y.o.) but really looked to his father as a role model and how he handled things.  Now when he is not feeling well, he knows he has someone really close who understands.
We were of course terrified of him having Crohn's before his diagnosis but at the same time there was not a lot of the waiting and ruling out various other things before diagnosing him.  Once I explained his symptoms to the doctor, tummy pains, bowel movement issues, tired, weight loss.  They tested him first for Crohns.  I would say at the time he was terrified and hated needles and the first blood draw was awful I hate to say as he was so dehydrated and upset.  I think he just about squeezed my hand off.  It has certainly gotten easier especially after that first year where they were doing blood work every 4-6 weeks.
I'm kinda rambling here so I will get to the point I was trying to make... The sooner you get him tested the sooner they can figure out what is going on and make him feel better.  I'm sorry you are going through this and wish no one had to.


----------



## DustyKat

Hey SarahAnne, 

I wholeheartedly agree with all that has been said above. 

When Matt showed one week of very, very mild symptoms I was in two minds about taking him to the doctor. I thought I was having the biggest over reaction of the century but there was something niggling at the back of my mind and I can honestly say I didn't even have Crohn's on my mind, or did I?? 
Anyway i saw his GP and asked if he could do a request for bloods including ESR and CRP. His CRP was raised and within two weeks he had his diagnosis. 

To say my head was spinning would be an understatement! After the dust had settled I thought about how all this had come about and I think I did what I did out of fear. The fear of him going undiagnosed like Sarah was obviously playing on my mind so much that I feared not knowing more than I did hearing my fears confirmed. I think you may be at this point too hun...



> I really really don't want my son to be sick. But I will die inside if he is having issues and I'm standing by doing nothing because I want it to be nothing.


...that says it all. God knows it is heartbreaking enough to hear the words Crohn's Disease but the guilt of doing nothing will leave a scar that never heals. 

My son has always hated needles and anything to do with doctors, hospitals, anything! It sounds bloody awful when I write it down or say it out loud but after Sarah was diagnosed and seeing all she went through I use to sometimes think to myself...if one of children had to have this awful disease then thank goodness it's Sarah because she can handle it. Well then it was Matt's turn and he stepped up to the plate in a way I never thought possible. Boy did I underestimate him! :lol:

I hope more than anything that your boy doesn't have IBD but if he does won't he have the best darn advocate he possibly can with such a wise, caring and understanding Mum in his corner.  

Dusty. :heart:


----------



## Suzysu

ARRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGGG:ymad::ymad:
Sorry just had to get that out!!
  I think most of you know Freddy's story so I won't repeat it! 
  After last Monday's fantastic GI appointment I have been on a high, Freddy was eating really well, pain getting less, poo bright orange and slimey but less frequent - and not as diarrhoea like as normal - YAY!
  Now we are bareley eating at all - back to throwing food on the floor as if angry with it, (or alternatively throwing it at the dog as that is apparently more amusing). Being very emotional and clingy - needing mountains of hugs and cuddles. And the diarrhoea is way worse (started after a dark pink\maroon BM). - no vomiting (yet) though so I suppose that's good!!
  I just don't know what to do I know he is not seriously ill but he is obviously not normal - I hate the thought that he is in discomfort and pain - I just want him to be better and be able to lead a normal life
  There rant over!!
  Sorry everyone!!


----------



## crohnsinct

Suzy:  Sorry but I think throwing food at the dog is pretty funny too:ylol2:

Is he still on the senna?  Maybe now that you got him regular the senna needs to be decreased and that is why the D?  Dark pink/marron?  That sounds like it could be blood BUT Freddy has always pooped the colors of the rainbow so might be nothing.  Maybe give the GI a ring to see what to do about the senna.  

I really hope his refusing to eat is just his review of your cooking.


----------



## Suzysu

:tongue::tongue::tongue::tongue:

  I will have you know that I have made 2 batches of honey fairy cakes and they have all been gobbled up! (although not by Freddy) and my first 'breadmaker' loaf of bread is just in the breadmaker now (ok so I suppose that doesn't really count as me cooking it).
  The dog enjoys having food thrown at her - at least she appreciates my cooking!! (although she does also seem to enjoy licking vomit up off the floor as well so I'm not sure we can really base much on her sense of taste!).
  I wondered about blood too but as you say he does seem to produce multicouloured stools!! - good point about the senna having done its job! the GI said it should take a couple of weeks so maybe I will wait it out for the next week (unless he gets worse) and then reassess the situation. The only thing that is bothering me slightly is if the senna has done its job why is he starting to be clingy and emotional again - I suppose it could just be that he is feeling out of sorts or that the senna is causing a bit of discomfort.

  Who knows!!

      Thanks


----------



## Farmwife

What's wrong with YOU Crohnsinct!!!!:voodoo:
You kick poor Suzysu why she down!!!
And what if her food is so bad that it could make every living soul sick.:stinks:
 She would feel bad.:kiss:
Now don't you feel horrible!!!!:tongue:
:rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:

:ylol2:Sorry Suzysu you really do deserve better friends then the two of us.:hug:


Farmwife


----------



## Suzysu

I'm just glad I am able to provide a constant source of amusement for the two of you!!:shifty:
How is Grace today? Hope she is doing alright :heart:


----------



## Tesscorm

Don't you worry Suzy, my kids (Crohn's aside) have grown up just fine with my cooking and yours will too!  :lol:

For all we know, Crohnsinct and Farmwife are all talk!  :lol:  After all, we haven't actually seen or tasted their cooking...  hmmm!

But, I hope Freddy's feeling better soon and that it is just his body adjusting to the Senna :ghug:


----------



## Farmwife

You know I was thinking that exact same thing....:eek2:
Crohnsinct is all talk.:rof:



Farmwife:tongue:


----------



## crohnsinct

:rof::rof:the gig is up:rof::rof: 

I will have you know I baked homemade honey wheat bread last night...so BAM!  Even though I have been reading about the terrors of wheat...so basically I am poisoning my family.  I can't win for losing. 

Better stop picking on me or I will have all 100 of those kids I am feeding next week post reviews to this site after every meal!


----------



## crohnsinct

Would love to stay online and quip back and forth with you ah hem ladies but I have to go make 20 candy leis for my little one's end of the year party.  I may not impress in the kitchen but when it comes to crafts look out...you do know Martha Stewart came from CT...where do you think she gets all her ideas?


----------



## Suzysu

:ymad:
The GI nurse just called, Freddy had a high potassium level and because his phosphorus level was high at the previous sample (oh but at this sample they didn't think to re-test it!!!!) he has to go back in to have a whole load more blood tests next week. My very helpful MIL has been saying all along that all his problems are to do with how many bananas he eats - and now she says his high potassium is down to this too (I know bananas are high in potassium) It would bre REALLY annoying if she were right!! - Does anyone know how many bananas is too many for a 2 year old?? - he really does love them and sometimes it is all I can get him to eat.
Sorry to be moaning yet again - I know most of you have far greater worries  than me.


----------



## Tesscorm

Sorry Suzy, have no idea re the bananas   But, how many does he eat?  I would think it would be difficult to truly eat TOO many bananas???

(On the off chance that it is the bananas...  OMG, don't tell your MIL!!  :ybatty


----------



## poppets mum

Really not sure if I am doing the right thing here, but Amy's GI has offered to do a colonoscopy/Endoscopy, although he is totally convinced she has IBS. At the time I agreed to it, because I am really hoping that he finds something to explain this constant tummy pain that is instantly fixable. I really don't want it to be Crohn's but I also don't want it to be ibs as what I've read on it so far, it can be miserable with no pain relievers or much of anything can be done for it. Anyway Amy doesn't want to do it as she still remembers the last one, plus it can't be done until the first week of school in September:ymad: Meanwhile she just keeps getting worse. Still barely eating,tired a lot,backache,dizziness and headache.Does anybody elses child have these symptoms? As I have said before, so far all blood tests and ultrasound have come back completely normal so I am second guessing myself on whether to go ahead with the scopes.:confused2:


----------



## Suzysu

Hi Poppet's mum

  I really am no expert but given her previous history of a bowel abcess, and her current signs i guess further tests are needed - I don't know her medical history but maybe she has scarring, adhesions or a stricture from the previous abcess? - Im sure your GI knows best but maybe ask if a MRI would tell more? I don't think a scope can visualise the whole intestine so maybe they missed the inflammed bit last time - maybe she needs a pill cam? If you just go with the IBS dx would you totally accept it? or everytime she got worse would a tiny part of you be questioning the diagnosis? I don't think there is an easy answer and I know how hard it is to watch your child struggle, and in the same way how difficult it is to put them through any kind of medical procedure. Thinking of you loads :ghug:


----------



## Tesscorm

Hi poppets mom

I would go ahead with the scopes.  My son's symptoms included weight loss, loss of appetite, tiredness, fever, pale, backaches, night sweats, canker sores and diarrhea.  The symptoms weren't constant, they would come and go, sometimes all would be present, sometimes just a few...   His GP ran a number of tests (now, I'm not sure all of what she was ruling out - hepatitis, mono, parasites, etc.) and all came back normal (except iron levels).  Even our first trip to emergency, with more tests and ultrasounds, all came back normal (or just 'minor' indications of inflammation).  When we finally took him to our children's hospital's emergency, he was admitted and by that time his CRP and sed rate were elevated (not sure if his GP ever checked these???).  However, there are many members/children who's inflammation markers (CRP, Sed Rate) are normal even while the inflammation is active.

Do not give her nsaids (i.e. ibuprofen, etc.) for her backaches as they will aggravate intestinal inflammation (my son has been told Tylenol only and he uses Tiger Balm ointment to help his backache).

You can also ask her GI re Enternal Nutrition (EN) - regardless of IBD or IBS, EN for a time period may help alleviate some of her symptoms as it is very easily digested, provides bowel rest, is anti-inflammatory, will provide her with her necessary nutrition and has absolutely no side effects (and, if it is Crohns and dependent on location, has a comparable success rate at inducing remission as steroids).  However, compliancy is a bit difficult as the usual course of treatment is approx. 6 weeks with formula only (no food).  But, in Amy's case, as you do not have a diagnosis yet, perhaps just a week or two will just help to alleviate symptoms.

I'm sorry she's struggling now and, as a parent, it's so heartbreaking to see them suffering and not be able to help! :ghug:  I hope some of this info is helpful...  

Good luck!


----------



## crohnsinct

Suzy: Too many bananas?  Is there such a thing?  You are lucky your MIL is pointing to the bananas and not your cooking and I am not kidding here my MIL is convinced my cooking poisoned her son and gave him type 2 diabetes because he didn't have it when she cooked for him...um he left your house at 21!  

Poppet: I don't have much to add but just so you have a full committee vote I vote scopes.  But that is me...I wouldn't rest until I knew something for sure..either she has IBD or not and then we could move on.  Of I didn't have them do it, I would always wonder.


----------



## Suzysu

I'm sure the banana thing is her way of blaming my cooking - I'm sure if I raised him on good kosher chicken soup like her boys he would be fine  The best quote was from my husband 'well he never had any problems before you started feeding him solids' - if that is not a direct way of saying my cooking is rubbish I don't know what is!!!!
He eats 1-2 bananas per day - maybe that is too much for a small boy, maybe I will cut him down a bit just in case - its just we have already cut out so many things he likes - I may as well just take him to macdonalds every meal time at this rate - we will be feeding him nothing healthy soon!!


----------



## crohnsinct

Oh no!  You already started solids before age 5?!  There's your problem right there.  What parenting manual are you reading? 

I would be shocked if the doc said 1-2 bananas are too much for a child. Now if they are constipated maybe cut down a bit but certainly they wouldn't tell you that many bananas are not healthy. 

I would be equally shocked to hear of a MIL who doesn't blame all of thir son or grandchildren's problems (physical, emotional or financial) on the daughter in law.  I know they are out there..I just haven't met them.  

It is clear you are an amazing mom doing everything in your power to try to find out what is happening to Freddy (was I really just nice to you?) so don't let the turkeys get you down.  You keep fighting the good fight and tell her and any other noise makers to hush up...we got your back girlfriend.


----------



## poppets mum

Thanks so much for your replies ladies. Your advice is invaluable and has made me feel much better about my decision. I just talked to her dietician today, who said she is quite interested to see what the scopes will show. Amy did do 6 weeks of Enteral nutrition by NG tube with nothing other than water. 2 years ago. Now she won't even look at the stuff, but Dietician said she will talk to GI doc, as she feels and so do I that her bowels really need a rest. Just trying to think of a really good bribe to make her go for it.lol Have the feeling she would go for something big like a pony.


----------



## Crohn's Mom

hi poppets mom,

just curious , did the EN help Amy when she tried it ? 
Maybe if she noticed a big difference with it, and remembers how good she felt, that will help her be more open to trying it again on a trial basis ?

Best of luck !


----------



## poppets mum

Crohn's mom, the EN worked really well and I believe, helped us to avoid Prednisone. I would totally recommend it. If anyone ever wants to know our experience with it feel free to ask. I tried to get Amy to remember how good she felt on it, but I think I will have to pick a better moment and try again, as she was having several pains last night and was not in the mood to discuss anything. The dietician has suggested the social worker try having a chat with her. I think she will be earning her money big time on that one. Ha Ha. For right now we are gonna try Gluten free and see how that goes. Your daughter is beautiful by the way.


----------



## Suzysu

Anyone tried slippery elm powder? It is supposed to help GIT problems. Freddy has had a bad few days and yesterday and today instead of giving him calpol when he was bad I mixed this powder with a little milk, he took it ok and maybe it is just coincidence but it did seem to ease things a little and seemed to give him a burst of energy (a little too much if truth be told!!). He still has bad diarrhoea with bloody mucus so it hasn't made a difference with that (yet) - just wondered if anyone else had tried it and weather they gave it regularly or just when there were problems?


----------



## leah

My little one is 3years old she has had constipation from a baby when she got to 1& a half it got worse, I was sent home with movicol which didnt help her went back and forth 10+ times they kept giving me movicol for her and then lactoluse and others like it but didnt help. I wasnt happy with the local doctors or paeditrician at the hospital so i move to another hospital they did the same put her on movicol i told them it didnt work but no one would listen. After another year & half of back and forth to hospital she was admitted for a week to try all different medication including enemas which didnt work just caused her a lot of distress this was because the doctor didnt believe me that medication was not working, They realised how bad she was and referred her to the childrens hospital, She was given an x-ray she was so badly blocked up it was above her ribs she was that full of poo so they admitted her in the childrens hospital where she had klean-prep fed through a tube in her nose, That un blocked most of it but not all 4 weeks later she was back for another klean-prep she was put on movicol (Yet again!!) liquid parafin and senna this hasnt helped at her she keeps blocking up finally i have been listend too & she is in for rectal biopys & camera on the 18th july to find out what is going on, They think it may be crohns but i was told it is so hard to detect it could be years for a diognosis. hirschsprung's disease has also been mentioned. I was wondering if anyone else has had problems like this with there children and also if there is anywhere i can get help with nappies she has constant leakage and going through 10+ nappies a day & i really cant afford to be going though this many


----------



## poppets mum

Sorry to hear of your problems Leah. Although not as bad we are going through something similar with my daughter. It has become quite the experiment to see what I can give her to make her go:voodoo: she takes 17 grams of lax a day every day but I find I very often have to adjust that dose to more's We also tried Enema's but I think she developed a fissure as she screamed when the liquid went in and told me it was really stinging, and yes there has been problems with leakage. I think there may be a product out there that is like a nappy liner, would a few of those help maybe? Sometimes getting a Crohn's diagnosis is very tricky because of its skip pattern. It seems like you can have a ton of the symptoms and still have a negative test. We are being told she will likely have ibs but I really have my doubts. Will have to see what the scopes say. Anyway just wanted to let you know you are not alone and maybe other people will have some suggestions.:cool2:


----------



## DustyKat

Sort of off topic...

How many have kiddoes with persistent canker sores? Well I am sitting here and Dr Oz is on the telly talking about canker sores. He said that if he saw someone with persistent canker sores that last longer than about 4 days he would be concerned about them having one of two things cancer or IBD!!!

Maybe everyone should go to Dr Oz for their diagnosis! 

Just sayin'.  
Dusty.


----------



## David

For those undiagnosed kids out there, make sure they've been tested for Yersinia.  

http://pediatrics.aappublications.org/content/104/3/e36.full


----------



## Farmwife

That's interesting about the canker sores. Grace has had a few. My husband on the other hand has had so many at one time that it's scary. He's suffered from them since childhood.They last for a week or better.
I'll let him know the link. That will take his mind off the farm for a while. It's least I could do. lol
Farmwife


----------



## crohnsinct

^^^LMAO:rof::rof::rof:

Is there no end to your love and devotion?  Such a selfless soul!


----------



## Farmwife

Love and devotion!!! ARE YOU KIDDING ME!!!!
I got into a OLD SUV with no AIR Conditioning! 103 degrees!!!!
By the time we reached my twin's house I was sweating in places that aren't normal and my little girl is slumped of in her seat and my son wanted to get on the hood so he can fly and cool off. 
This is ALL because my hubby hasn't made up his mind about a new SUV. 
My love and devotions come in when I STILL let him share our bed.

Farmwife


----------



## crohnsinct

A/C?!  Boy you country girls are spoiled...No A/C down in the subway today!  Nothing like the smell of piss and body odor at 105 degress to start your day off right...but we don't let it bother us...all us city folk singing Kumbaya! Rats move slower in the heat too!


----------



## Farmwife

:rof::rof::rof::rof::rof::rof::rof::rof:

Rats and cows move slower in the heat. Nice to know it's the same all over.:ytongue:

Farmwife


----------



## poppets mum

Amy is on her 4th bout of mouth ulcers since she started with the tummy aches. This last one is a beauty too. I am thinking of naming it, as it is so big, and is enjoying camping out right near her lip making itself very visible. She also has a very itchy rash on her face and arms that I've been giving her Benadryl for but it just won't go away. Wondering what's next.


----------



## Crohn's Mom

Poppets mum , how is Amy doing ? Dusty, remember last year when JJ had mouth ulcers and I told his GI doc about them right before he had his colonoscopy and she said "maybe he willed them there!" arrgghh.

So I took JJ this past Wednesday for his follow up on his four hour growth hormone test.  His doctor said that a normal range for producing growth hormones at his age should begin around 12-13, well.....JJ's is at 1.4 !! Basically he isn't producing any growth hormone.   The next step is to have a brain MRI to look at the size of his pituitary gland, and also to make sure there isn't a tumor of any kind.  Then, if that scan comes back "ok" then he will be starting the Human Growth Hormone (HGH) injections daily.  He said he will be starting him on a very high dose to begin with.  The things we are to watch for are headaches/migraines, and/or severe hip pain.  If he gets either of these we have to call immediately.  As soon as we get authorization from our insurance company we will be having a nurse come to our home to show us how to administer the injections.
Doctor said he wants to see JJ back in his office in December, and he expects that he will be at least 3-4 inches taller by then and will have started puberty. 

We still don't have an answer as to "why" he's not producing growth hormone, but at least we have a hopeful solution to it.  I'd love to know that it's not Crohn's causing it, but I guess time will tell.  
I'm going to do a little more research on the Hgh and also try and see if there are any studies involving Hgh and Crohn's.  I wonder if any of you know, or have heard of Hgh either helping, or interfering with Crohn's ?

Never in a million years did I think I'd have two of my children administering injections to themselves as part of their childhoods ...:shifty:


----------



## DustyKat

Yes! I do remember that T! :thumb down:

Oh hun, good luck with the scan. I so don't want for him to have a tumour but I wish for you to have solid answers and soon! 

I don't know much about HGH and Crohn's so no help there. It sounds like the doc is on top of things though.  

Sending loads of love, luck and well wishes your way T!

Dusty. :heart:


----------



## dannysmom

Good luck T!  I will read about that now ...


----------



## Suzysu

Good luck for the scan - and I hope the injections go ok - thinking of you xxxx


----------



## Crohn's Mom

http://www.practicalgastro.com/pdf/March09/KaneshiroArticle.pdf

Interesting article on HgH and Crohn's Disease !


----------



## Tesscorm

Good luck T!!!  I hope all goes well with the scan and injections! :ghug:


----------



## Farmwife

Here's a question? 
Do you HAVE to have diarrhea and or blood in your stool to have UC?

I was just given a piece of info (thanks crohnsinct) that points to possible UC instead of crohn's. Grace however doesn't have any diarrhea YET!

Thanks Farmwife


----------



## crohnsinct

IDK farmwife...we are just stabbing in the dark here.  I sooo hope the doc on Thursday agrees that he GI needs to get moving quicker towards a dx.  Anyway...just found this too: 

Symptoms, the presence of colitis is evidenced by certain disturbances of sensation and function which vary greatly in degree depending, of course, upon the intensity of the irritation of the mucous membrane of the colon. The presence of gas, a certain sense of bloating and a tendency toward constipation are some of the earliest symptoms of colitis. Later on colic-like pains due to spasm of the intestinal muscle occur from time to time. Abdominal distress becomes severe and a definite sense of nausea not infrequently puts in its appearance. In some cases vomiting actually occurs.

When a case of colitis is as far advanced as this, diarrhea is almost invariably present. Certainly common sense should tell us that what the colon is trying to say is that it is in no condition to handle food or anything else. The irritation caused by the presence of anything in the colon induces spasm and continued irritation induces a voluntary effort on the part of this portion of the intestinal tract to get rid of everything one way or the other. Technically, we say the patient vomits or has diarrhea, but the plain facts in the matter are that the colon very much “wants to be alone.”


----------



## Farmwife

Thank YOU for the info.
 I was just telling my hubby I feel like we're watch Grace fall into something.
 Keep in mind she's already been through a lot.


A question of curiosity:
Did any of your children have c. diff before or at the onset of their illness?


----------



## poppets mum

Thanks for enquiring about Amy Crohn's mum. She is still the same despite trying several different diets.:voodoo: I am sorry to hear of your extra problems. I do have some idea of what it is like to have 2 children with problems, as my older one has had a chronic pain condition where most joints at some time or another become very painful and she also has mild scoliosis that causes a fair bit of discomfort. So glad to have an excellent Childrens Hospital nearby. Oh plus a husband who has had 2 hip ops due to osteo Arthritis, in his early forties. I am beginnig to think this family of mine is addicted to hospitals Anyway I hope everyone is having a half decent summer.
  :thumleft:


----------



## dannysmom

Hi poppets mum ... I feel like my family is similar. My husband has had so many joint surgeries, oldest son has severe spine issues leading to a triple level fusion, and Danny with this Crohn's-like undiagnosed illness. All of them have scoliosis too. Danny also has headaches like Amy. I am sorry Amy is having a rough time. Is your current plan to wait until Sept to see the scope results?


----------



## poppets mum

Oh wow Danny's mom, your whole family keeping you busy too eh? I don't know about you, but with all the appointments and ER visits etc, the hospital feels a bit like a second home to me:ytongue: We are indeed waiting things out until September, although still having mixed feelings about the scopes. At least I can say my own health is really good (bloody well has to be doesn't it):rosette1: How about you? have you found any good ways to cope with everything? Here's a :hug: for all you and your family have to put up with.


----------



## dannysmom

poppets mum said:


> How about you? have you found any good ways to cope with everything? Here's a :hug: for all you and your family have to put up with.


Thanks 
I am nobody to take advice from ... I used to be very healthy, until Danny got sick. I ended up with Graves disease which is normally triggered by stress - that started right after getting the incorrect Cystic Fibrosis diagnosis last year. (I thought I was handling the stress well.) I have a friend that takes an hour walk daily to help with stress (her daughter has had terrible head pain for 12 years now) ... I think that is a good idea. Hugs to you too!


----------



## Crohn's Mom

Well, MRI is complete and now we wait some more for the results. :ywow:

I was a bad mommy and decided not to pre-warn JJ about needing the contrast with his MRI today  He was not too happy with me when he found out there was a small needle involved ! (exactly why I didn't warn him! lol)  The tech said he did a great job tho ~ I'm guessing/hoping we should hear something about the results by end of week and then find out when he can begin the injections.

On another note, (ironic that I just mentioned this recently), JJ seems to have "willed" himself another mouth full of mouth ulcers this past week! :ywow: I bet we could get rich if he'd just tell us his secret powers ! 

Hope everyone is doing well !


----------



## Tesscorm

I hope you don't have to wait too long for the results and, of course, that the results show nothing serious! :ghug:  And, wow, what secret powers he has!!! :facepalm:

How is Gabby doing?  I hope she's feeling alright. :confused2:


----------



## poppets mum

If he can will himself mouth ulcers, you should have him play the lottery:thumright:


----------



## DustyKat

:eek2: Nearly the end of the week T! 

I hope all goes well with the results hun...:goodluck:...and kudos to JJ for doing such a fab job at radiology!  

Dusty. xxx


----------



## Momto2girls

Hi girls! Well, I haven't been around in a while! Sorry for being away -- it has been a busy summer. And for a while Gracie was doing just great! The sulfasalazine seemed to work well...but then when it ran out 2 weeks ago the GI wanted to take her off. So almost right away she started getting constipated again. So I added back in some miralax, etc. Well, she's still going (some days even twice!) but it looks hard and pebbly. And then this morning she had blood in her stool.  So I called the GI. Now sure what to think????


----------



## Farmwife

:thumleft:Hi and welcome back!
I'm so glad to hear she was doing well for awhile.
My Grace is in the same boat, but hers is soft stool.
 I tell ya, what are we going to do with these Gracie's of ours.:sign0085:
Well at least my girl is happy for the most part.
Sorry no idea about the blood. We've been blessed so far not to have seen much blood in Grace's stools. The only time I have seen it is when she had hard stool constipation.

Farmwife


----------



## Momto2girls

So sorry Grace is sick again too -- no fun at all! Argh!! And I was JUST thinking how well she would be doing for the start of school! 

Are you taking Grace back to the GI??

They usually want us to have soft stools? Hmmm....you have to be a poop detective, don't you!?!?


----------



## Farmwife

Well she has soft stool after 3-5 days of NO stool. :confused2:
Yes a poop detective is what I've tried to be and a poop detective I am NOT!:rof:

Actual I'm calling the GI now to ask about a high level Grace had and to let them know the she has diarrhea now for 3 days. Always something.
 She's not showing any sigh of pain. No knee or eye pains. No rashes. Only right side pain. I'll take what I can get.:hug:

Have you heard from your GI yet?


----------



## Momto2girls

OH! I know what that is...we have that...it sounds like an impaction. Likely she's having diarrhea around her constipation. Can you get a quick x-ray? It is the only way to know for sure. We have done many many cleanouts from impactions. So sorry!!

ETA: I never did hear if you had a scope done??


----------



## Momto2girls

Oh and the nurse called. She was going to talk tot he doc and said either he'd call me or she'd call me back. Might not be until later this afternoon.


----------



## Farmwife

No go. I just talk to the nurse at the GI office and said were to watch her closely. She agrees that she might be impacted BUT she's not feverish or suffering right now so lets give the Miralax more time to work.:angry-banghead:
Well at least my hubby is happy with that!:yfaint:

So basically some more wait and see.


Maybe I can go back into my dream world now.
It's lovely here, the breeze, the ocean air and NOT a COW or TRACTOR in sight!:emot-dance:


----------



## Naturelover

Sorry, posted in wrong area of forum. Re-posted under new topic.


----------



## Crohn's Mom

Received a phone call from the Endo doc and jjs MRI results were good !  whew! he should be starting his hgh injections within the next 2 weeks! 

He went to his highschool orientation this morning and said out of all the incoming freshman he was the second shortest student ! LOL it's time to help this kiddo grow


----------



## Tesscorm

OMG, soooooo glad the results were good!!! :banana:  What a huge relief that must be for you!!! :thumright:

Tell JJ not to worry!!!  Stephen was one of the shorter and skinnier kids until he hit about 14 and then shot up a foot+ over the next year or so!  Once JJ starts on his injections, he'll fly past everyone! 

And, tell JJ a little help is always a good thing!  Both my kids are always trying to 'build muscle' and be the 'stronger' one and Stephen taunts Emily that HE gets 30 grams of protein JUST from his formula every day and she doesn't!  :lol: :ybatty:


----------



## poppets mum

Brilliant news about JJ:wink:


----------



## poppets mum

Sitting here having a guilt attack for giving Amy cucumber yesterday. About an hour afterwards she started complaining about tummy really feeling sore. She has been in agony all day today and has not wanted to eat or drink anything. Has anyone else had problems with this evil veg?


----------



## Tesscorm

My husband doesn't have crohns (although, sometimes I wonder?? IBS maybe?) but he does have trouble digesting certain foods.  Cucumbers cause him lots of pain, troubles, etc.  Strangely enough, he doesn't have the same problem with 'English' cucumber (the longer, thinner version).  Also, peeling the 'regular' cucumber helps too.


----------



## Naturelover

Awesome! Grow JJ, grow!


----------



## Suzysu

Just thought I would update everyone on how little Freddy is getting on.

He has stopped vomiting - YAY!! lots of retching and watery sounding burps and hiccups but no actual vomiting (my carpets couldn't take any more!!).

He still has diarrhoea.

He is still often in abdominal pain (and I am suspicious of joint pain as well but he is a little too young to be certain).

He is still on his low residue diet, we ran out of his sennokot medication last week and he got a lot worse and is now constipated!! At least I know it is helping him.

We had another follow up with our new friendly GI today. He has put on weight! YAY! but has not grown (but it's only 6 weeks since the last appointment). The GI did a great job of explaining everything and talking me through the plan - I am still not totally convinced by it all - feeding a child that supposedly has constipation problems a low fiber diet seems so wrong - but apparently its the fiber that causes the pain??).

 We are supposed to go and see the GI again in 1 month - again I find it odd that on the whole Freddy is doing better than earlier this year but they are doing much more frequent checks on him! oh well better to be checked than not!! And he didn't have to have a blood test today - double YAY!!!!

  One thing that is odd is Freddy drinks at least 4 times the amount my other children drink - I did sort of mention it to the GI but he didnt seem interested, He said he needs to drink a lot and be active to help with the constipation (which when on the medication Freddy only has diarrhoea - maybe that is why he drinks so much!) and he really does drink tons and we are a very active family. We are going to split his senna dose in half and give it twice a day instead of one big dose all at once to see if this helps pain and poo wise!!

  I think I am still a little confused about it all but generally happy with how the appointment went!

  I feel better for writing everything down! - YAY for this forum!!


----------



## Tesscorm

Hi Suzysu,

Glad he's doing a bit better and being followed up more regularly!!

I hope you continue to gradually see more improvement :ghug:

Good luck at the next apptmt!


----------



## Crohn's Mom

Hi Suzy q  

Glad to hear things are ok !

I don't know if it means anything or not, but Gab has always drank tons more than her siblings and peers. She's Always seemed to have a never ending "thirst". 

Hope things get better and better !


----------



## DustyKat

Thanks for the update Suzy!  

So fab to hear that things seem to settling a little......hoping it all continues to trend that way. 

If drinking water was an olympic sport Sarah would be a dead set cert for a gold medal! :lol: 

Dusty. :heart:


----------



## Crohn's Mom

JJ started his HgH injections today and .....He did it on his own !! 
Trust me when I tell you what an amazing feat this is for him !
We had a nurse from his Endocrinologist office come to our home this morning and train us. She was so very sweet   I think it helped JJ to hear that she has been diabetic since she was 10 years old and has been doing insulin injections herself since she was 12  

We were told that we should begin to see signs that it is working within 3 weeks ! 
He let me take a picture of him on day one, and we have decided to take one each month and then make a collage of the pictures showing his growth  
Nothing like doing something positive right ? 

How's everyone else doing in their quest for answers ? Anyone close to jumping off this roller coaster yet? Or closer to a cliff ? :rof:


----------



## crohnsinct

Wow!  Good for JJ!  3 weeks?  Holy cow!  Hope you didn't buy too many new clothes for school....


----------



## Crohn's Mom

Thanks ! We purposely bought his clothes about one size too big :rof: The shirts are easy to get away w/ being "too big" cause they're just t-shirts, and the shorts he just wears a belt with for now. We skipped buying long pants or jeans as it's still crazy hot here anyhow and we know whats coming.  As for shoes, he is obsessed with shoes :lol: however, he has at least three "newer" ones from a few months a go so being the mean mommy I am he has been forced to wait on the New shoes ! :rof: It's going to be a bit strange when we do buy new shoes this next time because we have been buying the same size for nearly 3 years now ! :shifty: Hopefully his clothes will last a few months till we can get over the expenses from buying these for the new school year, coupled with the vast amount we spent getting Gab into her new apartment, and new college books, and food, and on and on...:rof:


----------



## Suzysu

Ha Ha I know what you mean about buying the same sizes. I was sorting all the boys clothes out yesterday, and realised that the 2yr winter trousers go up to Freddy's shoulders!!!! I think he will be wearing last years winter clothes again (good thing I didn't get rid of them really!!!!).
Glad to hear thet JJ is being so fantastic about his injections and even better that you should start to see some improvement so soon!!!!
Good luck!! xx


----------



## DustyKat

WTG JJ!!! :award2:

Hope the you know whats fit a little longer T! :eek2: :rof: 

Dusty. xxx


----------



## Naturelover

Melissa goes to Hopkins Pediatric GI doc this coming Tuesday. Tuesday can't get here fast enough. No changes. Still taking a ton of meds, still pain.....


----------



## Suzysu

I am hoping you survive till Tuesday - and hoping that they will be able to help her. Sending you lots of healing thoughts xxxx


----------



## Tesscorm

Good luck on Tuesday!!! :ghug:  I hope they are able to help her quickly!!


----------



## poppets mum

Gonna be a tough week. First Amy's Hamster died, tomorrow she starts a new school, then colonoscopy/Endoscopy Thursday. I don't know if I am more frightened of them finding something or not finding anything.


----------



## Farmwife

Wow that will be quite the week for her.
I hope all goes well for her and you.
Yes I know what you mean.
 We search and search for answers. 
Then we think do we really want to know???


----------



## Suzysu

Good luck Poppets mum - Fingers crossed that it all goes well on Thursday - I know how it feels being scared that they will find something and being equally scared that they won't. xx


----------



## Crohn's Mom

Best of luck that all goes well on Thursday!


----------



## poppets mum

Thanks Farmers wife,crohn's mom and Suzysu, she'll be drinking the pico salax in about half an hour from now.:stinks:


----------



## Tesscorm

Hope all went well for Amy yesterday... :ghug:


----------



## Naturelover

...so how did Thursday go? Any closer to sorting things out? I sure hope so. Sending warm thoughts and prayers your way. NL


----------



## Naturelover

Melissa went to Hopkins this past Tuesday to see GI. The doc wants her to have a motility study done. It may be possible that because the one area of colon was attached to the pelvic wall for so long that damage has occurred to that portion of the colon so that it may not be able to contract properly. The doc has to contact the adult GI doc who does the studies in order to set it up as he does not take pediatric patients any other way. She will also be informing him about my situation as well as briefing him on Daniel's GI history. Hopkins is starting a new clinic solely devoted to GI Motility issues. Our family would be a good one to research, gather data from and follow. There are several different types of motility studies that can be done. Our goal now is to work towards reducing the meds necessary to keep Melissa's colon moving things along. I took the x-rays with me to show the doc. She said she was glad I did. She would not have called the amount of hard stool in the colon that was directly in front of the coccyx normal. So, that makes three doctors and two parents who disagreed with the radiologist who wrote that the x-ray was within normal limits. If it turns out that there is only a section of the colon not functioning correctly, there are things they can do. My guess is surgically removing that part of the colon? It was really neat having a doc say to me, "I agree with you. I think this is more of a motility issue." I am so grateful that Melissa's docs care so much about her as to order test for something that may not be part of their field. Melissa's GYN was the one who ordered this last set of x-rays. She was floored at the amount of meds required to get Melissa's colon functioning. Her pediatrician listened to what I had to say and ordered blood work. The blood work was what indicated to me that this was more of a motility issue. The inflammation markers have gone down since the surgery. 

What was nice about our visit with GI was that she answered any question I had, whether it was about Melissa's issues or my own GI issues. Due to my vast medical knowledge, I get into some very detailed non-laymen’s terminology conversations. Mike thinks because the doc knows I understand what she is talking about and doesn't have to spend so much time trying to help me understand what is going on that it frees her up to answer other questions that may not be patient related. Hmm, I never thought about it that way. We have known this doc (19 years) since she was a resident at Johns Hopkins. She is now the Chief of Pediatric GI. She is more than just a doc, she is a friend. How awesome is that!?

Now onto my GI doc visits. The Endoscopy biopsy results showed inflammation in the esophagus, erythema and friability of the antrum compatible with gastritis. Hiatal Hernia in the cardia. 

Biopsy: No signs of bacterial infection that could be causing the gastritis.  No Barretts disease. 

I am currently having the upper GI motility as I type this. The glowing gourmet breakfast was wonderful; NOT!

I will have a colonoscopy next week and a Colon Sitz Mark Study (type of upper and lower motility study) the following week. I’m grateful I have a GI doc who is willing to do what is needed to get to the bottom of things. Hopefully I can get a diagnosis so that the proper treatment can be implemented and I won’t have to have the GI pain any more.

I had the ultrasound of the area where the two blood clots were located back in May. They are still not fully dissolved. Small amounts of the clots remain. Bummer! The tech also did an ultra sound of my implanted port and the surrounding area.  I’m waiting to hear back from the doc. I’m sure she’s not going to let me stop the Warfarin. Shucks!

Hubby gets to schedule an endoscopy and lots of other fun things. I think he will schedule his sleep study first.

This ends this chapter. Nothing going on much in my family. LOL! Coming soon, updates on….


----------



## poppets mum

Apologies if this turns into a long post. Yesterday it would have been much shorter but now I am completely confused. So colonoscopy went really well. The only thing I was wondering about during prep was that Amy had just 3 small bowel movements. Afterwards he came and sat with me and showed me pictures of a very nice healthy looking bowel. At this stage he said he was going to diagnose her with ibs. I can't help feeling disappointed about this as I was really hoping he would find an ulcer or something else that it a quick and easy fix. (yeah I know I want to have my cake and eat it:ylol: So last night I get a phone call from GI doc saying Biopsy results are in and he totally sang the guys praises who does these, saying he is one of the best, they are showing mild/moderate inflammation in her colon:confused2: um ok. He is now talking about things like MRI and possibly another scope just lower down. Of course I never learn to keep my mouth shut as  I had told Amy she would never have to do that again. Now he is not sure if it is indeed an IBD  After a near sleepless night he phones me again this morning to say colonoscopy prep could have caused inflammation but we are to go ahead with MRI. My head is just spinning and I don't know what to think. Inflammation explains a lot of Amy's symptoms to me but apparently not to him. One of the other things he did say was the amount of inflammation doesn't explain the amount of pain she is having, huh? The thing is with my kid she seems to like to keep everyone guessing, as we still have never had a satisfactory explanation for her small bowel abscess two years ago.


----------



## Suzysu

my goodness - that is confusing - I am guessing if she hadn't had her previous abscess they wouldn't be so worried about the inflammation? They can't see the whole of the bowel with the scopes so I guess that is why they want to do the MRI, maybe he thinks the inflamation could be worse or showing more signs somewhere they can't see. 
I know it must be so frustrating that you still don't have any clear answers but it looks like you are well on the way to getting there with a GI who is taking things seriously.
I hope she gets these other tests soon so that she can get the help she needs. xxxx


----------



## dannysmom

I am glad he ordered an MRI. Danny's scopes always look good (although sometimes red) but biopies shows non-specific mild inflammation in many parts. Doctors do not call Danny's IBS, but also are not convinced it is Crohn's.  Good luck!!


----------



## my little penguin

Jeanne- I know you said he got worse on pred but did they ever consider if he was allergic to th pred . My oldest is actually allergic to it. Has he seen an allergist?
Depending on how he reacted - my sons was not typical


----------



## dannysmom

Thanks MLP. We saw an allergist, but he was not tested for allergy to Pred. That is interesting point tho .... and I believe there are purer forms of the steroid. Danny had taken pred many times in the past for asthma, but that was several years before this illness so he could have become allergic.

I will share an update now .. Danny has now returned to school, 10 days without missing a day!! (After 3.5 years of home instruction this was huge for us). I'd say he is feeling about 75% better than when at his worst. And that is enough energy to make it through a normal day. Our next plan is to try LDN again, but given his slow improvement trend over the last year his doctor thought it was best to not rock the boat and see if he continues to improve. Danny caught a cold after his first week and had a 102 fever on Saturday. (In 7th and 8th grade it was back to back colds that set him back onto home instruction) I thought "here we go again ..." but by Sunday afternoon he was feeling much better. Whew! Fingers still crossed!! and I pinch myself each day because it is so hard to believe he is doing so well


----------



## Suzysu

Im so glad Danny seems to be improving - and managing school!!!! a massive achievement! - I hope the improvement continues and he reaches 100% improved! xxxx


----------



## Tesscorm

:banana:  Great, great news!!! :headbang:  So glad school is going so well!


----------



## poppets mum

Danny's mom what do they think it possibly maybe could be? Do they ever give you any clues? I am glad my GI is open minded enough to admit that Amy doesn't fit neatly into any one category and for all he knows it could even be some new unexplored IBD. So glad to hear Danny is feeling a fair bit better. I can't believe how strong these kids can be the things they learn to cope and adjust eventually to is amazing. I so hope this continues for him.


----------



## dannysmom

The 2 GIs we see admit they do not know and Danny is a tough case. Other specialists think it is Crohn's. (Infectious disease dr, endocrinologist, rheumis, internist ...) After the Cystic Fibrosis dx (then retracted) ... accepting undiagnosed became much easier. 
How is Amy doing now? (We've also been told by a 4th GI that Danny's pain and symptoms do not match the inflammation found IF it was Crohn's)


----------



## DustyKat

@dannysmom. What a fab update! How wonderful to read of Danny's achievements, bless him. May it keep getting better and better and better! 

@poppets mum. Have they done blood inflammatory markers or faecal calprotectin? If not I think it would be well worthwhile to see how they correlate with the scope findings. These tests may well return normal results but I think it is a good start before moving onto to more extensive tests of the small bowel which in my opinion they should. :hug: 

Dusty. xxx


----------



## Crohn's Mom

Such good news Dannysmom  !   I always love hearing when the kids are feeling good! 

JJ has been on the Hgh injections for 2 weeks now, and it's going pretty well.  He mostly does them himself.  The  last few days tho his anxiety has creeped back up and he's been having me do them for him because his hands shake to badly  We haven't noticed any side affects really.  He had headaches the first few days and I was a bit worried, but they have now gone away  
He told me yesterday that his shoes are getting really tight ~ of course that's exciting news around here since it's usually the feet that grow first, and then the height follows ! LOL.  Other than that, the only thing we've noticed different is that he is eating so much more!  That's such a great thing to see tho from a kid that has been eating like a mouse for the last year(ish) 
Can't wait to see what the next couple of months bring for him, but so far it seems like the Hgh is beginning to do it's thang !


----------



## Suzysu

YAY!! go JJ!! so glad things are going well!!


----------



## DustyKat

Thanks for the update T!!!  

I am so excited for JJ! I'm sorry to hear that he is having some anxiety over doing the shots himself, bless him...:hug: but as long as they are working who gives hoot who gives them! :lol: 

I am hoping, wishing and praying that all continues to go well for JJ hun. :goodluck: 

Dusty. xxx


----------



## my little penguin

Danny's mom
Have they looked at mcas
Not systemic masto
This is milder no excess mast cells just ones that miss behave
Criteria just came out a year or two ago

Here are the links

http://www.jhoonline.org/content/4/1/10

http://www.ncbi.nlm.nih.gov/m/pubmed/21035176/

http://www.jacionline.org/article/S0091-6749(10)01333-3/abstract



Other thing to look into us eds
Connective tissue disorder
Depending on the type it can cause a lot of what you have seen.
A child I know had many years undiagnoised until finally they checked this out.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

The child did have a lot of unexplained Gi issues to the point of tube feeding.


----------



## my little penguin

http://www.medicine.wisc.edu/~williams/mast_cell_activation_2011.pdf

Better paper on mcas


----------



## dannysmom

Thanks for the MCAS papers ... I had only read about ME so find them interesting. Will spend more time rading about it.

We did do genetic counseling for connective tissue disorders about 2 years ago (because my older son is believed to have an unknown connective tissue disorder that contributed to back issues.) It did not yield anything however.

thanks again


----------



## Tesscorm

:banana:  Great news about JJ!! :banana:  Glad you're starting to see results!


----------



## poppets mum

G'day Dusty. Thanks for replying to my post.  All Amy's bloodwork keeps coming back as normal. He did mention her doing a stool test, is that the fecal cal thingy? He also talked about putting her on Pentasa, although he even admitted cos of where the inflammation is ie not in the rectum so probably more Crohn's like, that Pentasa would probably not do much. He did say that if he saw something on MRE that he would be pulling out the big guns. Ok now I don't want her to have IBS cos this seems like no fun at all if that is what she ends up being diagnosed with, at the same time I just can't believe that here we are 2 years on, worrying and wondering if she will get a Crohn's diagnosis. GRRRRR


----------



## Suzysu

Hi everyone!

               Freddy had another GI appointment today. The GI thinks he has small intestinal bacterial overgrowth and he is putting him onto a course of metronidazole and has advised a low sugar diet (I thought we already had a low sugar diet but now I have looked into it I realise that we do not!!). I am considering putting the whole family onto an SCD-type diet but am a bit scared and I don't know how we will all cope!! 

 Anyway I hope all little tummies are behaving themselves!


----------



## Farmwife

My doc is looking at the same. But he said that SIBO is usually a sencondary cause. We need to figure out the main problem is but still treat the secondary. Which is one of the reasons my GP wanted to do this very expensive testing on the stool. I hope the meds work. Let me know how it all goes.


----------



## Suzysu

Damn! - I thought we had found the answer! everytime he goes it escapes out his nappy and runs down his legs - he seems to have toxic poo and now has nappy rash down to his knees!!
Anyway I am sticking well inside my new little bubble in the hope that the antibiotics and new diet sort things out!!
Are you going totally SCD or just trying to eat more natural?


----------



## my little penguin

One another diet is fodmaP
Very low sugar and much more doable.


----------



## Farmwife

Nope Suszu were doing clean eating diet. Talk to crohnsinct about it. She's cornered the market on this.

MLP, What is Foodmad diet? I've heard it mentioned but never looked it up.


----------



## my little penguin

You eat low lactose, no gluten, avoid certain fruits / veg that have high amounts if sugars in them since they cause issues ( bloating gas etc.., ) in the gut.
http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495

Some recipes above
http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495


> FODMAPs are a group of carbohydrates that among IBS sufferers are malabsorbed in the intestines, causing excess gas, diarrhea, and bloating. By avoiding high FODMAP foods, IBS symptoms can be kept at bay. Recent studies have shown GREAT promise and hope for relieving IBS symptoms through this diet modification. In fact, 75-90% of people suffering from IBS who starting following the low FODMAP eating approach had significantly decreased GI symptoms, enough to continue following this eating plan. However, it takes a great understanding and knowledge of these foods, how to avoid them, and what to look for on ingredient labels. This can be tricky and requires some guidance from a professional…. which is why I want to help!!! Knowing first hand how much more enjoyable life can be without IBS symptoms, I will give a crash course on each FODMAP for you


----------



## my little penguin

We did The diet for two weeks but saw no improvement in DS. I was starting to get sick on milk. I had done it with him so I pulled the diet before lactose became an issue for him.
But C has been his issue never D


----------



## dannysmom

All these diets are all different ... it is a bit frustrating, but they are targeting different things. My older son, who has had digestive issues his whole life (but much different than Danny's constant troubles), recently tried FODMAP after realizing that apples make him sick, and he is lactose intolerant. FODMAP works really well for him. Apples have no effect on Danny.


----------



## Suzysu

Thanks MLP - I have just got a FOODMAP diet book from the library - I haven't had a chance to read it yet but felt it seemed a little more friendly than the SCD diet (this sadly was after I had just raided the supermarket of all its extra expensive gluten, wheat free flour and associated items!!!!).


----------



## Suzysu

Dannys mom - I guess everyone is different and has different issues so every diet will work better or worse for different people! was the foodmap diet easy to follow for you son? what ever diet we put Freddy on will have to work for the whole family!

Question for everyone: If your digestively challenged child can't eat certain things do you still allow siblings those things? I am of the view that if Freddy can't have something the others shouldn't either (at least not if he can see them). My husband says that the older ones will resent Freddy for this and we should let them eat whatever they like and Freddy will just have to get used to the idea that he just can't have certain things. I struggle with this as Freddy is only 2 I don't think we can really explain this to him properly.


----------



## crohnsinct

Wow hard one suzy because you are right he is only 2 and while I am sure he is the smartest 2 year old on the planet there is no way you could reason with him and have him understand.  BUT I agree with hubby too.  Maybe let the kids only have those items when Freddy isn't around??? If the things he can't have aren't really all that good for anyone then I say take them away period!  

Good Luck!


----------



## Tesscorm

Yep, agree with Crohnsinct...  For now, if they are thing's you'd like to allow the other kids to have, do it when he's not there...

But, as he and siblings get older, I think you'll have to find a balance where he learns that there are things he can't have but his siblings will also have to learn that, as a family, you support one another and sometimes make sacrifices...


----------



## DustyKat

poppets mum said:


> G'day Dusty. Thanks for replying to my post.  All Amy's bloodwork keeps coming back as normal. He did mention her doing a stool test, is that the fecal cal thingy? He also talked about putting her on Pentasa, although he even admitted cos of where the inflammation is ie not in the rectum so probably more Crohn's like, that Pentasa would probably not do much. He did say that if he saw something on MRE that he would be pulling out the big guns. Ok now I don't want her to have IBS cos this seems like no fun at all if that is what she ends up being diagnosed with, at the same time I just can't believe that here we are 2 years on, worrying and wondering if she will get a Crohn's diagnosis. GRRRRR


Hey poppets mum,

Unfortunately normal blood results aren't a rare occurrence.  If the stool test is looking for inflammation then that would be calprotectin or lactoferrin. 

Ah hell, there's no denying that when you are faced with this disease and everything that goes along with it you surprise yourself with the things that you wish for! :hug: 

Dusty. xxx


----------



## dannysmom

Hi Suzy ... I agree with the others and you. Two is just too young for him to understand. It will be good for his siblings to learn to be supportive.  Danny was 11/12 when we tried the restrictive diets ... and only he followed them. We'd eat the SCD foods with him ... and then add pasta or rice to our meal too. (Danny did not like pasta or rice much anyway). We all liked the SCD desserts more than Danny (almond nut muffins, pecan pralines). I think FODMAP is much easier as it does allow more carbs. From what I read you just needed to limit gluten nor remove it entirely (maybe because fructose is the bigger issue for my son) .. so the diet is not that hard.  Carrots and stringbeans are fine and they are the family's favorite veggie anyway.  Good luck!!!


----------



## poppets mum

Against my wishes, my youngest baby Amy turned 10 today.


----------



## Crohn's Mom

Happy Birthday to your baby !! :dance::dance: double digits ! What a nice age ~ my kids were all very happy to reach that ~ :ghug:


----------



## eragsdale

I'm new here and thought i would try (haha) to sum up my daughters' issues.
She will be 2 on November 3rd.

She was born @38wks 5lb13oz (normal weight for my kids). I breast fed with the elimination diet starting at 6wks when i noticed mucous in her poo.

_side note: we have been down this road before with my oldest - so i knew what was going on_

I was unable to keep my milk supply up (never have figured out why) - so we started supplimenting with Neocate - she did WONDERFULLY on this:heart:. One time we had to use Elecare and she reacted with screams and blood in stool - the % of one of the sugars is different between the 2.

6mon rolls around - unable to tolerate peas and other "normal" things - i started her on the "intolerance introduction to solids" diet. Tried soy milk - screams, constipation, mucous....

Back on full Elecare, no solids until poo goes back to "normal".
9mon blood work allergy testing done - all came back negative

12mon - introduction into solids with fluctuating syptoms of:

extreme constipation/Diarrhea
mucous/blood in stool
weight loss/failure to thrive
bloated stomach
sluggish
joint pains
stomach pains/screams
headaches (?)
diaper rash (burn type)
allergy rash

17mon - wakes up SCREAMing, unresponsive, breathing change. Was able only by God to get her breathing regulated back out and calmed. Was on the phone with 911, they showed up and stayed with us for an hour.

Next morning called the Pedi and picked up epi-pen. Pedi scheduled pedi GI doctor.

Introduction to pedi GI.
Thyroid test - normal
CDC - normal
wants to see if Celiac is an issue orders a biopsy

19mon: Lower GI/colonoscopy is scheduled
reintroduction to:
Gluten
Soy
Casein/Lactose

3 days into reintroduction - HORRID rash all over body  + diarrhea & mucous
lower GI/colonoscopy results:
negative for Celiac
positive for lactose intolerance
inflammation of the colon

immediatly go back to "allergen free" diet. Unable to regulate stomach issues, bowl issues and NOW we have a horridish rash that we can't get to go away.

August:
rast skin allergy testing done - negative, but also determined inconclusive as he can't truly tell what is allergy reaction and current rash.
Was advised to cut out tomatoes and all shade veggies

September:
rash looks like chicken pox, but has lasted more than 4wks. Go to pedi, not chicken pox, not measles - can't explain 
"constant" diarrhea
joint pain

Pedi GI: orders stool testing done to determine possible Crohn's

and here is where we sit

Foods she cannot currently tolerate:

Lactose - diagnosed intolerance
Casein
Soy
Gluten
Apple Juice
Tomatoes

I think i've listed everything........


----------



## Suzysu

Poppets mom - HAPPY BIRTHDAY to Amy!!!! scary how quick they grow up!!

Eragsdale - so sorry that you have been through so much with your little lady. When they did the colonoscopy and found the inflammation in her colon I assume they biopsied it and it was negative for UC\crohn's? You say you have been through this with an older child? did they ever get a diganosis for your older one?

Has she had boods tests for various vitamin or mineral deficiencies? and iron? if her guts are not working properly then it may be various deficiencies causing some of her other signs?

When do the results of the stool sample get back?

I hope you get some answers soon xxxx


----------



## Farmwife

Hi Eragsdale. Welcome to the forum.
My little farm princess Grace is also undiagnosed.
Our stories sound eerily similarly.
I hope you get answers soon.
Please feel free to pm anytime.

Do you or another child have IBD?


----------



## crohnsinct

Farmwife said:


> Hi Eragsdale. Welcome to the forum.
> Our stories sound eerily similarly.


I was thinking the same thing!!!!

I am so sorry for all you have been through.  I don't have a lot of advice as my daughter's disease and dx came fast but did want to welcome you to the group.  Maybe some of the others with more experience will be able to offer advice or suggestions.


----------



## Farmwife

crohnsinct said:


> I was thinking the same thing!!!!
> 
> I.


crohnsinct,

That was settle me friend.:yfaint:


----------



## my little penguin

Few things:
Rast test are blood tests for allergy. There is also a skin prick test.
If she is covered in rashes ( sounds like papicular eczema ) then her allergy load would have been too high. The fact she did well on neocate but had issues once found was introduced raises flags for an eosinophilic disorder .
Eosinophilic colitis can cause inflammation in the Gi tract(colon).
Most Gi miss it unless they are looking for it.
I don't know where you are but national Jewish hospital in Denver Colorado would be a go place to start. They take a team approach and help the kids who don't fit in the box.
EC has triggers it is an EGID disorder and once you figure out the triggers things can get better.
http://apfed.org/drupal/drupal/index.php


----------



## eragsdale

Suzysu said:


> Poppets mom - HAPPY BIRTHDAY to Amy!!!! scary how quick they grow up!!
> 
> Eragsdale - so sorry that you have been through so much with your little lady. When they did the colonoscopy and found the inflammation in her colon I assume they biopsied it and it was negative for UC\crohn's? You say you have been through this with an older child? did they ever get a diganosis for your older one?
> 
> Has she had boods tests for various vitamin or mineral deficiencies? and iron? if her guts are not working properly then it may be various deficiencies causing some of her other signs?
> 
> When do the results of the stool sample get back?
> 
> I hope you get some answers soon xxxx


No, he didn't do anything with the information of the inflammation, because "I wasn't looking for Crohn's I am looking at Celiac. We will keep this in mind if we can't figure it out." :banghead: He has tried to reduce the inflammation with nexum (which i still haven't figured out what he is trying to regulate if he isn't testing her) - green mama in this whole area.

She isn't deficiencant in anything including iron - that was one of the first things I have them check every 6-8mon since she is on a limited diet.

She is currently having diarriah issues, but her rash seems to be clearing up, but I won't hold my breath as I'm pretty sure there will be a flare-up again.

results should be back in a couple of days.

No, my oldest has a slew of allergies/intolerances - also unexplainable. They are thinking IBS. He as well diagnosed with lactose intolerance. He has neurological issues with Gluten/Casein

His allergies/intolerances:
Gluten
Casein
Lactose - intolerant
Soy
Corn - allergy
Strawberries - neuro
Oranges - neuro

They get all this from my side of the family and I feel so bad 

she doesn't have the main causes of an EGID. My ODS did, but we learned later on that it was sensory than anything.


----------



## happy

eragsdale,
Welcome to the forum. I caught your post earlier today and then came across an article that you may find interesting: http://www.livingwithout.com/issues...5890a:&st=pmail&s=P_TuesdayTip092512&t=B_TL_P

May you and your family soon find some help on this difficult journey.


----------



## Sandie17

Hi, i am new to this but i thought i would share our story.  My daughter was diagnosed with crohns at 5years old after being ill for over a year. She is 18 now and in that time she has had 5 major surgeries, countless investigations, elemental diet 5 or 6 times, first via a ng tube then she had a gastrostomy fitted when she was 10.  She is currently n humira, prednisolone, pentasa, iron, selenium, adcal and vitamin b12 injections.  We have been told that her crohns is very aggresive and it does not respond well to treatment.  The surgeons say they will now only operate as a very last resort because she is still very youbg and has already lost around half if her small bowel.  My daughter is a wonderful girl who copes so well with everything she has to deal with.  We are so very proud of her.  I have an 11 year old daughter too , who thankfully is completely healthy. I also have a 3year old son, who has been having problems for months.  He has alot of tummy pain, constipation, diarrhea ( which can have mucus) , loss of appitite, tiredness and pale complexion.  He has had blood tests done and we get the results today.  We are praying that he doesn't have crohns but it does feel like he s a carbon copy of what his sister was like before she was diagnosed.


----------



## eragsdale

Sandie hugs.

Happy:

see she doesn't have any issues with the upper part of her body. No reflux, no gagging, nothing=it is all digestive and colon related with the complexity of the rashes.

Now, that does sound like me though. There are several times that I have to excuse myself to the bathroom to sit and wait up-to 30min for it to come back up with lots of acid :/


----------



## my little penguin

Ec is just colitis cause by an allergic reaction to food . It only affects the colon.
The only way to know would be by biopsy count if EOS present.
Inflammation would still be present.
Does she vomit or have blood pressure drops?
There is such a thing called fpies.
See here 




> FREQUENTLY ASKED QUESTIONS ABOUT FPIES
> 
> What Does FPIES Stand For?
> FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).
> 
> What is FPIES?
> FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside. (Note: Having FPIES does not preclude one from having other allergies/intolerances with the food.) The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.


From:
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251785982


----------



## Sandie17

Well we got jamies blood results back. It showshe has raised ESR.  We are now waiting for an appointment to see the IBD docs at the childrens hospital.  Should be seen within six weeks or so.  He has been referred to the same team of docs that took excellent care of my daughter when she was younger.  She attends the adult hospital now.  We still hoping that jamie doesn't have crohns but at the moment it is all a little bit familiar.:confused2:


----------



## Suzysu

Sandie - I am so sorry after all you have been through with your daughter and as you say it all seems a little too familiar for poor Jamie. I will keep my fingers crossed that he does not have Crohns. If he does then you will be one of the best parents to deal with it and he will gain valuable insight and support from his sister - sending you big hugs xxxx


----------



## DustyKat

Hi eragsdale and :welcome: 

I am so sorry to hear about your little one...:hug: I don't have any further advice to offer but would like to welcome you to the forum and wish you all the luck in the world in finding solid answers for your daughter, poor love. :ghug: 

Dusty. xxx


----------



## DustyKat

Hi Sandie17 and :welcome: 

Oh my goodness, what a difficult and worrying time for you...:hug: I hope your little boy is okay but I well know the deja vu of having travelled that path before. My thoughts and well wishes are with you. 

And your daughter, bless her. It is no wonder you are so very proud of her.  What an amazing young lady she must be! 
Has a stem cell transplant ever been mentioned as a possible treatment for her? 

I hope more than anything that your younger daughter continues to be blessed with good health.  

Good luck to you all and welcome aboard! 

Dusty. xxx


----------



## Suzysu

Freddy was sick yesterday for the first time in months - oddly it was a meal he hadn't had since he was really sick (beef meatballs, tomato sauce, and wholewheat pasta). He also has a cold so I am hoping that it is just a bug or something - he has been sent home from nusery today with a low grade fever so I think it is just a bug.

  His px for metronidazole (for the supposed SIBO) finally reached the pharmacy. I know that compared to most meds metronidazole is as safe as houses but still after reading the medicine insert I still didn't want to give it too him!!

  The low sugar diet is going better than expected luckely he is off the low fiber diet so can have fruit again (which he loves) and my older children are being fairly understanding about it all.

  I know compared to everyone elses problems Freddy's are minute - it just helps me to write it down and keep things in perspective!


----------



## DustyKat

Thanks for the update Suzysu...:hug:

I hope Freddy is soon feeling better and it is indeed only a bug, bless him. 

I know my children are much older that your little guy but Matt was on Metronidazole for 6 months and had no issues with it. Having said that, I well understand how you feel about it hun. :hug: 

My daughter has cut out processed sugar from her diet and also watches how she consumes natural sugars. She doesn't juice fruit because it concentrates the sugars too much and eats very little, if any, dried fruit for the same reason. Of course Sarah is an adult and so making these changes is her choice but it may be something to think about for Freddy. 

Oh hun, Freddy's problems aren't minute compared to ours. He is your boy and it is his story and his alone and it is just as real and valid as anyone's here so don't ever feel that your issues don't match up to anyone else's. :ghug: 

Plus writing it down here is a damned good journal! It's amazing what you have forgetten when you back over your own old posts! But that just may be me an my memory! Shut up y'all! :lol: 

Dusty. xxx


----------



## Suzysu

Thanks Dusty!!

  Normally I don't really stress out too much if the kids need antibiotics (even though my middle one has had bad reactions to several of them!!) as they usually only need them for a week - I guess I'm just stressed about it this time as its for so much longer!

  Luckely Freddy seems unable to tolerate dried fruit so we stay well clear (or suffer the very unpleasant consequences!!!!) and again luckely I just dont really give them bought fruit juices. BUT we do have a juicer and I had been thinking of making them fresh juices and didn't realise that it concentrates the sugar!! OOPS!!!!

  Yes he is my baby but compared to what you guys have all been through and the amazing strength you all have to deal with everything his problems are really tiny! - I just hope he 'grows out' of the diarrhoea soon or he will still be in nappies when he goes to school!!!!

  As for your memory - it can't honestly be as bad as mine!!!!


----------



## Sandie17

Thanks for your kind words everyone:hug: .  It really helps to know that we are not alone.  We are still waiting for jamies clinic appointment.  He has gone from aving diarrhea to constipation and back again.  Yesterday he had a lot of quite mucasy looking diarrhea.  Hope this clinic appointment is soon.  We want our little boy back and we desperately need answers. :confused2: xx


----------



## Naturelover

Back for a short visit. My daughter's doc still hasn't called back regarding the motility study appt. I've had a severe concussion recently, so lost track of time etc. It's been well over a month since we were supposed to have been given that appt. I need help remembering to call the doc. Gotta locate her number first. Haven't a clue where I put it last. Also, doc found that my previous blood clots from May have not resolved and she found a third blood clot on the other upper extremity. Now having more pain and some increase in size in left bicep where two of the blood clots are. It just doesn't seem to be slowing down for us. Doc increase Rx of Warfarin. How can I take care of dd if I'm struggling to take care of myself? It's so frustrating....


----------



## poppets mum

Sorry to hear of your problems Nature lover, I know how dangerous blood clots can be so please monitor them carefully. I was given some good advice yesterday about recording symptoms, keeping track of different clinics, taking down names of professionals and what they do and going to the ER with all pertinent info such as meds etc already printed out. Hope some of this helps.


----------



## eragsdale

No, she doesn't throw-up.
We had another bout of 2wk D - and she has lost weight again. This is so frusturating.

GI is going to put her on either prednisone or Entocort. Has anyone had any luck with any of these: azathioprine or 6-mercaptopurine.


----------



## Mytwoboys

I am new here. I have been reading a lot of stories and I have been doing a lot of research and I am trying to find out what is going on with my DS who is 2yrs old. His story goes back to when he was just 3 months old and he started just screaming out in uncontrolled fits, balling up his legs in pain, and at times vomitiming. During this time we saw his pediatrician who believed that he had reflux and he was given zantac to control it, which did not work well. He was then placed on Prevacid which worked a lot better. These fits sometimes also caused him to lose his breath and one time I had to rush him to the ER because his lips turned blue. It was a scarey moment. It turned out that it was just the reflux, they said and that it was nothing I should worry about ((so they say))!! 

   Let me back up just a bit, he was breastfed when he was born but he devoleped jaundice and lost more than 10% of his birth weight so we had to supplement and because of my history of lactose intolerance and his brothers we immediately started with soy milk and once we started that he would not got back on the breast and I could not produce enough on the pump. So, when we saw the GI put him on alimemintum (SP?) which did not seem to help much either. He was still having boughts of cramping with constipation/diarhea, and vomiting. The GI then changed him over to Elecare which seemed to help with the vomiting but not with anything else.

   We saw an allergist when my son was a little over 1 and he tested positive for soy/milk and peanuts. We now have to carry an EpiPen because of the peanuts. But, the funny thing my DS just had an endoscopy done by his new GI that said that he shows no signs of allergy to milk, but every time he gets milk he is in pain that night. I am getting really frustrated. If we haven't given him any milk would he not show any signs of allergy?? Then the allergist has also frustrated us because my son has broke out when he ate something twice with cinnamon on it and pineapple and he refuses to do more allergy testing on him for 3 months. What is the hold up? To me something is obviously going whacky with my sons system and I do not know what is going on. 

Someone also mentioned the severe diaper rashes, my son also gets those. The ones that looks like burns and I have had to rush him to the ER because he couldn't even sit down or I couldn't hold him because it hurt so bad and it just comes on so bad. Where is all of this coming from? Now he is breaking out in these little bumps that look like the chickenpox, but I know they are not because there are only a few and they are not itchy at all to him. 

For five nights/days now he has been in pain and I do not know where to turn. I do not know if I should call his GI doctor again or if I should just find yet another doctor. I am starting to think he might have Crohns because it all fits, but I do not know!! I think if I hear that your son is having "night terrors" one more time, I might just scream!! :sign0085:


----------



## Farmwife

So sorry to hear about your boy. My Grace is three and a half and the has showed signs since the first few months of her precious life. We're in the same horrible category of undiagnosed. Her blood draws (labs) were coming back normal till lately so it must not be that serious doctors thought. We'll here I am today and she failing a bit every day for the past couple weeks. I hope you get answers soon for your little guy. Keep fighting for answers!!!!! Please feel free to PM me anytime with questions if you wish.


----------



## Suzysu

Hi mytwoboys - I know how Frustrating it is - my boy is 2 and has had gastro problems since he started on solid food. He is negative for all allergies, celiac, and his scopes were normal - and yet he still has problems. - I have no answers for you - just support. If he is constantly in pain then you need to hassle your Dr for more investigations\ answers. - I hope things improve soon xxxx


----------



## dannysmom

Hi momtwoboys - 
I also think that if your DS does not drink any milk than his endoscopy would not show any signs ... but this shsould not mean he is no allergic. What other testing has the GI done? It must be soooooo awful to see your tiny baby suffer so much. Feel free to create a new post in the Parents section so you can get more feedback. They welcome undiagnosed kids.


----------



## my little penguin

OK few things-
Your Gi was referring to allergic colitis ( milk allergy in infants) which causes inflammation.
If your child was not drinking milk then this would not show up. IT is an non-IgE mediated response. 
What your allergist tested for is IgE mediated allergies  which is why you were given an epi pen.
This site will help with the allergy side of things and weird non crohn's side of GI things:
http://community.kidswithfoodallergies.org

THere is a starter guide for allergy parents:

http://www.kidswithfoodallergies.org/guide_to_parenting_child_with_food_allergy.html

Did your allergist give you a food allergy action plan ( FAAN FAAP)
 on when to give the epi pen?

If not take this to him to sign:
https://www.foodallergy.org/files/FAAP.pdf

Cinnamon is a skin irritant and may cause a rash even if  your not allergic ( not saying your kiddo is not allergic) but most atopic kids do tend to have sensitive skin.

*IS your child back on whole foods now?
or still elecare only?*
Elecare would take care of the vomiting but is very constipating so most kids need miralax while on it.  The under 2 crowd tends to need a "milk" so not sure if he is still on it.

Constantly RAST testing or SPT testing is not recommended.
Most allergist would recommend keeping a detailed food diary of ate this at time this and what reaction if any you saw.

*IS he on a daily antihistamine? *
 Sometimes you have a full bucket theory where you would not normally break out to something but because your system is overloaded ( virus + fall pollen+ ...) = reaction when normally it would not be an issue.


*COuple of things how soon was the vomiting after ingestion?
How much?*

DO you avoid all milk products  (read labels for traces , may contains, made in the same facility as, call companies and ask about their manufacturing process)?

Two things come to my mind other than Allergy :
EGID disorder ( EoE):
http://apfed.org/drupal/drupal/index.php

and FPIES


> What Does FPIES Stand For?
> FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).
> 
> What is FPIES?
> FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside. (Note: Having FPIES does not preclude one from having other allergies/intolerances with the food.) The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.
> 
> A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. Many FPIES parents have rushed their children to the ER, limp from extreme, repeated projectile vomiting, only to be told, "It's the stomach flu." However, the next time they feed their children the same solids, the dramatic symptoms return.
> 
> What Does IgE vs Cell Mediated Mean?
> IgE stands for Immunoglobulin E. It is a type of antibody, formed to protect the body from infection, that functions in allergic reactions. IgE-mediated reactions are considered immediate hypersensitivity immune system reactions, while cell mediated reactions are considered delayed hypersensitivity. Antibodies are not involved in cell mediated reactions. For the purpose of understanding FPIES, you can disregard all you know about IgE-mediated reactions.
> 
> When Do FPIES Reactions Occur?
> FPIES reactions often show up in the first weeks or months of life, or at an older age for the exclusively breastfed child. Reactions usually occur upon introducing first solid foods, such as infant cereals or formulas, which are typically made with dairy or soy. (Infant formulas are considered solids for FPIES purposes.) While a child may have allergies and intolerances to food proteins they are exposed to through breastmilk, FPIES reactions usually don't occur from breastmilk, regardless of the mother's diet. An FPIES reaction typically takes place when the child has directly ingested the trigger food(s).
> 
> What is a Typical FPIES Reaction?
> As with all things, each child is different, and the range, severity and duration of symptoms may vary from reaction to reaction. Unlike traditional IgE-mediated allergies, FPIES reactions do not manifest with itching, hives, swelling, coughing or wheezing, etc. Symptoms typically only involve the gastrointestinal system, and other body organs are not involved. FPIES reactions almost always begin with delayed onset vomiting (usually two hours after ingestion, sometimes as late as eight hours after). Symptoms can range from mild (an increase in reflux and several days of runny stools) to life threatening (shock).
> 
> In severe cases, after repeatedly vomiting, children often begin vomiting bile. Commonly, diarrhea follows and can last up to several days. In the worst reactions (about 20% of the time), the child has such severe vomiting and diarrhea that s/he rapidly becomes seriously dehydrated and may go into shock.


from:

http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251785982




Rashes could be uncontrolled eczema , papicular eczema , allergen  (pollen or food).

*Have you tried creams or wet wraps?*



> What did work for us was aggressively treating the eczema. Eczema is not only "the itch that rashes" but is the skin's inability to retain moisture. The loss if vital lipids reduces the moisture barrier which means the skin loses water and becomes dry.
> To treat those two problems, we do:
> *Daily antihistamine
> *Daily soaking baths (with wet towels on skin that is not underwater)
> *Immediate slathering with: (a) Vanicream on all skin except where steroid may be needed; (b) one of two steroids where needed.
> Desonide (lower strength steroid) goes on face, axilla (armpit), groin
> Triamcinolone (slightly higher strength steroid) goes on anywhere that is inflamed that is not the face/groin/axilla
> 
> So if there is a flare--red/itchy/etc; that part gets the corresponding steroid for 5 days--even if it has cleared after 2 days because biopsies have shown continued inflammation that can't be seen by the naked eye.
> 
> Vanicream and steroids don't get overlapped on the same body part.
> Steroids get applied with a tongue depressor and then rubbed in--don't dip in with your hands and intro bacteria into them.
> Studies show that if you use the steroid for 5 days (even continuing after it looks cleared), you end up using LESS steroid overall (compared to those who use it sparingly).
> 
> I have found this to be true.
> 
> *After the Vanicream or topical steroid is put on, then cover the kid with warm wet pajamas and socks (even on arms). Then put warm, dry socks on top of the feet/legs and hands/feet. Then on top of that, put the warm pajamas (long-sleeves). The kid will NOT be able to take them off this way. Leave on for at least 2 hours, or overnight if doing it at bedtime. Bad flares may need bath/wet wraps 2 or 3 times a day.
> 
> We are just "maintaining" good skin, so we do it once a day at bedtime; and Vanicream all over the body also in the morning. But during bad flares, repeat the soaking and wrapping method a few times per day/night for best results.


from:

http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717252137825

For a very allergic kid with GI issues I would call NAtional Jewish hospital in Denver Colorado

They have a week long day program that could help you get to the bottom of all his pain and issues.
http://www.nationaljewish.org/programs/pediatric/atopic-dermatitis/

PM me if you have any questions.:ghug:


----------



## Mytwoboys

Thank you all for all of your wonderful information. I am looking into all of it. Yesterday we had a visit at the feeding clinic and my DS was put back on Elecare, prevacid, and taken off of all of dairy food completely. I am glad that they are working closely with my GI's office and it appears that there was some confusion when I went into my last appointment so the feeding clinic took the approach of taking him off of everything. 

He can still have some table foods but his diet mainly consists of puree's with his Elecare now to get his calories in and hopefully get him back to gaining weight. I forgot to add in my original post that he has some sensory issues that have also limited his wanting certain foods. Some reasons why we are in the feeding clinic. Another reason is we are having him tested next month for Autism, and if it is not that what the doctor's might think is also going on.

As far as his belly pain, since we have cut out the milk products for 3 days now he has not woke up with any "episodes". His rash hasn't fully gone away but they have told me that it could take a couple of weeks to fully get out of his system. I am optomistic that all of this could be the answer. I just have to be very vigilant in making sure that the labels do not have anything milk in it. 

Thank you all again for all your kind words and the information!!


----------



## my little penguin

If the purees are commercial baby food then they are most likely cross contaminated with milk .
They do not have to label for criss contamination by law.
Only what they intend to put in there.
The safest route would be to purée your own.


----------



## eragsdale

Got her results back, she has ulcerative colitis. So i guess i need to bow out of this forum and go find a ulcerative colitis forum


----------



## Farmwife

eragsdale said:


> Got her results back, she has ulcerative colitis. So i guess i need to bow out of this forum and go find a ulcerative colitis forum


No!!!!!:ywow: I mean you can but UC and crohn's kids are on the parent's forum.
Mary which is Rowan's mom and Angie which is Izzy's mom both those girls have UC.
Of course their's those of us in the undiagnosed world that are on there to.:ybiggrin


----------



## eragsdale

Farmwife said:


> No!!!!!:ywow: I mean you can but UC and crohn's kids are on the parent's forum.
> Mary which is Rowan's mom and Angie which is Izzy's mom both those girls have UC.
> Of course their's those of us in the undiagnosed world that are on there to.:ybiggrin


OH! yeah :ybiggrin:


----------



## Crohn's Mom

Yes please stay eragsdale ! This is an IBD forum for all forms ! 

Im sorry she has UC, but I am happy for you that you have some much needed answers 
Best of luck to your family in your new journey!

:hug::hug::hug:


----------



## DustyKat

Oh my eragsdale...:hug:...I am so very sorry to hear of your daughter's diagnosis but it is comforting to know that you now have an answer and can tackle things head on. 

I know the name of the forum can be confusing but it encompass all forms of IBD, including UC, and we are more than happy for anyone to hang out here that has intestinal issues of any kind and feels they are getting the information and support they need. 

Good luck and welcome to the club! The membership that no one wants but my goodness aren't we exclusive! :lol: 

Dusty. xxx


----------



## Suzysu

:depressed:

Yet again my bubble has burst :thumbdown:

So after out last consultant meeting (metronidazole and low sugar diet for suspected SIBO).

 The GP took ages to get the px for the MNZ and Freddy was really ill with a nasty cough and cold - all in all I forgot to give his Sennokot for a day and a half, I realised my mistake when I realised he hadn't pooed but thought I would just wait to restart the meds in the evening as I normally would give it - before it was due he did a normal poo! so I didn't give in the evening and the next morning he did another normal poo and so on and so on - so I never gave any MNZ or sennokot and for a couple of weeks everything was NORMAL!!!! (except for the knee pain, which I will come to later!!). And just when I was thinking I should cancel the next consultant app and tell them he is fine.........

  He starts the vomiting again

  Poo is dryish but soft and once to twice daily - def not constipated. At first I thought maybe he just has a bit of a bug, then I thought maybe its because he is just getting used to normal food again (after low residue). But after just clearing up the kitchen after projectile vomiting in front of friends we had round Im thinking maybe not :shifty-t: It is starting to happen with increasing frequency and larger volumes - getting worse not better. Today he ate a small amount of lunch, got down from the table - projectile vomited (covered approx 1-2m2 - very strong smelling) and within seconds he was running around playing again so he definatley isn't 'ill' if you know what I mean. He is generally eating less and sleeping more (9 hours at night and up to 4 in the day - he is 28 months old). He has also become quite clingy again.

  And now the knees!! All 2 year olds fall over a lot I get that, but Freddy's legs often just seem to 'give way' either when walking or trotting he doesn't trip over or it's not like he is running too fast, he doesn't limp first - literally his leg just seems to give out and he plonks to the floor - not enough to hurt himself but he really (and I mean really) screams, and cry's that his knee is sore. He won't walk a long distance without wanting to be carried or in the buggy. Now he has started to cry and say 'hurt knee' even when he hasn't just fallen over.:sign0085:

  He also has a rash (like little red raised spots but without the pimpley bits over his cheeks and chin.

  I just honestly don't know what to do - we have our next GI app on Wednesday and the consultant is just going to think I am an utter moron for not giving the meds - but he just honesly seemed fine and I thought maybe it was the sennokot giving him the diarrhoea and making him seem poorly when maybe he wasn't. I have never mentioned the knee business to the consultant but I supposed I had better mention it on Wednesday. I feel we have tried so many different meds, diets, diarys, tests etc etc and he seems to get better for a short while, then worse, then better - every time they ask 'what is different'? 'what has changed' - NOUTHING - I honestly can't say that one particular thing or group of things makes it better or worse:angry-banghead:

 My gut feeling is that there is something wrong with him but I just don't know what and am not even sure how I am going to find out - I don't want to put him through anymore tests but if there is something wrong then we have to find out what.

  Sorry for the long rant - thanks for listening (well reading really but you know what I mean!) - If anyone has a crystal ball that they could look into and tell me what is going on I would be very grateful!!


----------



## Farmwife

:angry-banghead::angry-banghead::angry-banghead:

NOOOOOOO not the blasted knee pain!:ymad:
JUST like Grace! She can't run more than 20 ft. without falling.
Grace likes to sit on heating pads now. I don't know if it help but she feels like it is something she wants to do when it hits.
So sorry. We're STILL waiting for the appointment with the rheumy.:yfaint:
Ironically we have decided to slowly back Grace off her Miralax.
As long as no damage is happening, we hope to ween her off soon.
But will see about that. :shifty-t:

Have to run, I didn't have time to write this!:yrolleyes:

HUGS


----------



## my little penguin

Have you look at elhers- danlos syndrome ?

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/

It can cause motility issues reflux and joint issues since its a connective tissue disorder .
Hope he feels better soon


----------



## Suzysu

Thanks FW and MLP!

I will test the stretchyness of his skin tomorrow, I don't think he scratches easily and I think things heal up ok - but it's worth a look!!


----------



## my little penguin

There are varying degrees. I know of another child who has this and suddenly falling and trouble walking was the big flag. I think genetics made the dx.
The child has a j-g tube -nutren and aslo has cyclic vomiting from it.


----------



## Suzysu

MLP - just been reading up more about it and think Freddy's pain\ collapsing legs are very likely down to hypermobility - it was this that meant he didn't walk till very late - so it could fit. I didn't realise that EDS could cause GIT probs as well so I will def mention it to the GI on wednesday - maybe we are closer to an answer than I thought - athough I am not sure he has soft silky skin - I will prod and poke him when he wakes up tomorrow!!


----------



## my little penguin

Just like Ibd there are four major subtypes of eds plus a lot more minor ones not all even have the stretchy skin


----------



## Tesscorm

Just sending hugs!!  :hug:  I hope the doctor has some ideas and can get you moving on the path to a diagnosis! :ghug:


----------



## Suzysu

And we are back on the Sennokot AGAIN
They say that maybe he needs to be on an amount of senna that causes diarrhoea to stop him from getting backed up and vomiting - however today when they felt his tummy they said there was no blockage - so why is he vomiting!!!!??
They also talked about IBD as if he could still have it - but I thought the scopes had ruled it out - confused.com!!!!
They were not really interested in his leg pain so maybe I need to go to the GP about it!
Anyway he has gained 100g in 6 weeks so that's good!
Back inside the bubble again!!


----------



## Farmwife

Hugs to you and your boy!


----------



## DustyKat

Goodness me Suzysu...:hug:...how awful for you and little guy. 

I don't have any suggestions but want you to know that you are in my thoughts and I am hoping, wishing and praying that you soon have solid answers and your boy has lasting relief, bless him. :heart: 

Dusty. xxx


----------



## Suzysu

Does anyone know if urine dipsticks also work if you use them to test diarrhoea?

Freddy passed a load of suspicious looking diarrhoea today - not frank blood, not black but had a kind of maroony pinky tinge to it. My MIL (who is a GP practice nurse) had given me some urine dipsticks so I could see if his poo had blood in it (as this has happened before). So I tested it and of course it comes up strongly possitive for blood. My MIL is away for 3 weeks so I can't ask her and I don't want to call the GP or GI nurse in case I look like a total wally and am wasting their time. Freddy is not acutley ill (vomiting seems to have stopped for now!!) but is not eating so well and is quite grumpy as if something is up.

  So I am hoping that one of you brainboxes knows the answer!!


----------



## Farmwife

Do you have the name of the sticks? Look up online and see. 
You can't be the only one that has ever typed that question. Right? :eek2:Or maybe you are?:confused2:


Glad he's feeling well for now. Please let me now about the stick. I wonder if I can get some?


:ghug:


----------



## Suzysu

On the web there is only info for using the test for urine. But I did find out that when testing for occult faecal blood you can get a false positive if you have eaten red meat - we did have pasta and meatballs yesterday (although Freddy never really eats the meat part!!). So now I don't know weather to worry or not!!!!
hope the EN is going ok? xx


----------



## DustyKat

I use them at work at times if I am suspicious that someone has malaena (black tarry stools). I use them if vomitus is suspicious too. 

Red meat could give a false positive but either way, with no other symptoms, at this point I would continue to observe. 

Just for future reference: I would also ask your MIL to get a couple of stool specimen containers. That way you could always collect a sample and drop it off at the GP's and have the doc have a look at it. If he has concerns he can then just send it off for testing. 

Dusty. xxx


----------



## Suzysu

Just something to brighten everyones day!

Freddy's vomiting seems to have restarted and slightly foolishly after tea tonight I was playing with him and dancing round with him to Michael Jackson - perhaps predicatably he projectile vomited EVERYWHERE - as I was cleaning up 'don't blame it on the boggie' started playing! - Just thought those of you with gastrointestinally challenged children may appreciate the irony!! - and my little story may bring a smile to your day!! :rof::rof:


----------



## DustyKat

You have certainly brought an ear splitting grin to my face! :ybiggrin:

That is classic! :mademyday:


----------



## Farmwife

To funny!!!

Suzysu tell Freddy:ywow: I vomit too when listening to Micheal Jackson!!!


----------



## Crohn's Mom

Does anyone have any idea as to what may cause heartburn to get worse at night ?
JJ has been waking up at all hours of the night with what I assume is heartburn ? He is complaining of regurgitation (throwing up in his mouth as he puts it) ~ sometimes 4-5 times per night lately.  Obviously, it is disturbing his sleep.

He has been taking Omeprazole daily for about a month now, and seems to be getting worse, not better. :/
He's also complaining of more stomach (lower abdominal) pain lately as well, and having diarrhea 7-10 times a day (according to him). 

I'm just not sure what is causing the worsening in the regurgitation during his sleep ? 
Any input or advice ?

I have made him an appointment with a GI, at HIS request, but it's not until the 4th of December ~ he is MAD that he has to wait that long...poor kid :/

thanks in advance for any input


----------



## DustyKat

Hey T...:hug:

As a rule reflux will often be worse at night because of the fact that you lying flat or close to it. When you are upright reflux can and does occur but when you are lying down if is far easier for stomach contents to travel the length of the oesophagus and you then wake with that awful feeling of burning in your mouth and the associated choking/coughing. 

It certainly is something that needs to reviewed when he waking that frequently, plus the increase in his other symptoms, poor love.  

I know it can be hard to sleep upright in a normal bed so something that might help is if you elevate the head of the bed about 20-30 degrees. You could use a brick under each leg or blocks of wood. 

Good luck hun. I hope JJ soon finds relief! 

Dusty. xxx


----------



## my little penguin

If he put on weight , eats too close to bed or meds are wearing off...
We had to up my oldest sons dose to 3 times a day.
He now sleeps.
Plus ped dose would be way lower than what a Gi would put him on .


----------



## Crohn's Mom

Thanks Dusty, I will try the elevation and see if that brings him some relief.

MLP, I have thought about upping his dose but I don't want to do it until he sees the doctor.  He's on 20mg right now, and usually takes it right after school because he can never remember to take it in the morning.  
He's actually losing weight, and we eat dinner usually at least 4-5 hours before he goes to sleep.   I'm trying to watch what he eats/drinks to see if it's something with that making it worse lately, but I dont see anything significant enough to make him stop. (except soda..I've made him cut that out completely ).


----------



## my little penguin

Has he seen a Gi before if so a call maybe all that's needed to up the dose ?
We don't up anything without the doc ordering it.
My oldest at 70 lbs was losing weight as well until he saw a Gi and was put on 30 mg of Prevacid a day which was more than the dose for an adult.
He is now on 75 mg of Zantac 3 times which is way more than the dose on the box again.
So having a Gi on board is key.
Glad you have an appt.
Fwiw my oldest gained 15 lbs while on Prevacid and grew.
Good luck


----------



## BoyMama2000

Thanks, I did email his doctor through this great system they have at our children's hospital. He already got back with me.  He said that they took several iron measures and all were normal so it was time for him to stop the iron!  I guess we will do it and I imagine he will be re-tested at some point.  He also said that the elevated c-reactive protein from 0.6-1.3 is something to note and watch but that we needed need to do anything different at this time.

I will see what his plan is for follow up blood work.  I may ask to see if we can re-do the c-reactive protein in a month because I know that can change rapidly.  The iron takes a lot of time to change so I am sure we can wait until his next visit for that one.

Thanks again, I will let you know what he says!


----------



## poppets mum

has anybody tried the fodmap diet with kids? We are on day two and it seems so overwhelming and confusing, even though the dietician went through it with us. Also not a very promising start as Amy woke up crying in pain and has felt nauseous all day. Also tried to stop Miralax last week and she quickly became constipated again oo: with some fresh blood (not a lot) in stools. MRI showed nothing so I guess for now we have to go with the IBS diagnosis although I am far from convinced. Seeing GP next week, hoping she can help us.


----------



## Suzysu

Poppet's mum - I half tried the FODMAP diet and got too scared and felt it was too difficult and gave up after about 3 days!!!! I did it off my own back and I think if I had a dietician leading the way so to speak I may have been a bit more confident with it - have you tried some of the adult threads about the diets - that may be useful? Are you able to call the dietician to get a bit more advice? Maybe Amy's digestive system is just getting used to things and it will settle down in a few days? - Sorry I cant be more help - good luck xx

  Freddy is having a big vomit once every 3-4 days, he is eating but not as much as normal, he has lost a tiny tiny bit of weight (but could just be the difference between the hospital scales and ours). He is a bit clingy and grumpy but not acutely ill, BUT he is still having intermittent pink\red coloured very soft foamy poo, even if he hasn't eaten any red meat - I have used the dip stick a few times when it is this colour and it does keep coming back possitive for blood. Do I need to call the hospital to let them know or just wait till our next appointment (mid december)? just don't know what to do (as usual!)


----------



## Farmwife

Call!
Can you get a sample. Maybe take it to his doc or to the hospital and see what the say.
Showing them a visible sign might get things rolling faster.

Has Freddy been scoped? Sorry I forget?


----------



## my little penguin

We did fodmap diet with DS this summer since his extra symptoms were suppose to be Ibs like( biopsies were read wrong-)
http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495

We used a lot of those recipes on the link
He was also still on peptamen jr so I wasn't worried about nutrients.
It did nothing for him.
He aslo could nt stop miralax while on it.
Remicade was the only thing that let us stop.
His ct scan was not consistent with Ibd either.
Only a scope showed the damage.


----------



## Suzysu

FW - yes he has had the scopes - all fine - I just wish he would get better or we could find out exactly what is wrong with him so we knew how best to tackle things - its just like an endless rollercoaster at the moment, just when I am convinced things are improving everything goes down hill again! I am going to give him the next couple of days and over the weekend if no improvement I guess I will have to call the hospital.


----------



## my little penguin

Hugs it is so hard when you don't know what is wrong and they are in pain.
Hope your weekend is calm but if he ges bad call your gp/Gi and take him in to the A&E.


----------



## DustyKat

@poppets mum - no experience with FODMAP here but I know Catherine has tried it too. Good luck with the appointment next week! :hug: 

@Suzysu - Unless the symptoms are new or have worsened I would probably hold off, just as you plan to do. Be sure and document everything and the minute there is any sign of deterioration then call or head to the ER. Good luck hun. :hug:

Dusty. xxx


----------



## poppets mum

Thanks so much MLP for the link just looked at some recipes and they seem a lot better than the ones I have in the diet book. Tried to make Ginger Beef the other day and it looked like Dog food.:tongue: SuzySu I completely understand why you gave up. This is fricking hard. Poor Freddy, how is he doing today?


----------



## Catherine

poppet mom

Our experiences with the FODMAP diet are mixed.

Sarah began the diet in November last year after breath testing for lactose and fructose.  She tested extreme high for lactose intolence and borderline for fructose.

On advice from a FODMAP dietitian we began to remove lactose, very high fructose foods (eg apples and apple juice), wheat, onion and garlic.  Sarah began to lose a large amount of weight 5 kg prior to Christmas, we ceased the diet and she lost another 7 kg in January.

Looking back the weight loss was no caused by the diet but it  may not have helped with the initially weighloss

We no longer following the diet, but Sarah also no longer drinks milk and has very limited apple juice.

Now me, I also went to diet i have a history of ibs and heartburn on remove milk from diet the heartburn ceased.

Now a couple of questions for you.  What has the dietitian asked that you remove or reduce in your child's diet.


----------



## gigamis

I have sent some messages to a few individuals and Im feeling a little foolishly desperate . . . . . my son who is all but diagnosed on paper is having a terrible flare up. He is only three and tylenol and IBprofen are not helping take the pain away . . . . what else can I do?


----------



## gigamis

So here is one of the original messages copied and pasted as instructed . . . . 

My 3 year old son is being tested for crohns, actually the only thing missing of his diagnosis is that it hasn't been put to paper. Every few months since he was born we have gone to the Dr about his digestive problems and last year finally started getting tests done. Even so the Dr.'s have been telling me that its nothing and he will grow out of it until this new Dr. I have never heard of anyone diagnosed with crohns so young, but his symptoms fit the bill and the new Dr. says he has "markers" that indicate IBD or Crohns. He is mid flare right now and watching him role and scream, refuse food, and want to sleep or act up inbetween the bouts of pain is killer to me. Tylenol or IBprofen does nothing accept take away any fever he might have. I guess what Im after is some advice as to how I can help him, what to ask from the Dr., and any other advise you have.


----------



## Clash

So sorry to hear that your son is doing so poorly, gigamis. If I understand your post he has not been diagnosed but has shown "markers" in on the blood test? Has he had a colonoscopy or endoscopy, MRI, CT scan? You may not want to give him the ibuprofen as it can exacerbate issues in the GI tract with CD patients. There are a couple of  parents on this forum with kids your childs age or round abouts that have IBD or are still on their diagnosis journey, I'll tag them...Farmwife, Suzysu, possibly Jenn, I know there are others but I am drawing a blank at the moment. I'm also going to tag My Little Penguin as she is a wealth of information and has wonderful advice about the testing process. I hope you are able to find answers for your son soon!


----------



## DustyKat

Hi again gigamis and welcome to the forum...:hug:...and you are not being desperately foolish hun, just a Mum is scared and worried about her boy. There are many parent's with children and sufferer's on the forum that have been diagnosed at your boy's age and younger so you are far alone in this. :hug:

What tests has your little guy had done and do you have copies of the results? 

What are his symptoms? 

Does he have any Extra Intestinal manifestations (EIM's)? 
e.g. sore eyes, rashes, mouth ulcers, joint pain. 

Do you keep a journal of his symptoms and daily functioning? 
Have a look at the one in the wiki. They can be useful when trying to get a diagnosis...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Could you give an idea as to your location so that others near you, or in the same country, can offer some advice as to where to seek help/opinions if need be. 

As I said before, if there is any thought that he may have IBD, and it sounds like there is, please don't give him Ibuprofen. It is a Non Steroidal Anti Inflammatory Drug (NSAID) and they are contraindicated in those with inflammatory bowel disease due to the side effects they can have...causing gastrointestinal bleeding. 

As you would well know it can be difficult getting relief for your boy until you nail that diagnosis, Farmwife will attest to that!  I know how hard it is to see your child in pain and not be able to do anything about it. We will help all we can Mum and hopefully you can get that diagnosis ASAP and your boy can gain long and lasting relief, bless him. 

Dusty. xxx


----------



## Farmwife

So sorry to hear about your little guy. He sounds like my little 3 yr old girl Grace.:frown:
Please PM anytime and I hope you get some answers to help him.

Hugs to you both.:ysmile:


----------



## my little penguin

Hugs 
So sorry to hear about your son .
Has he only had blood tests do far?
If so a colonoscopy and upper endoscopy is generally needed to dx Ibd .
Has he had an upper Gi series with a small bowel follow through or MRI or ct scan?
What meds does the Gi have him on?
If your in the US there are good pediatric Ibd centers found on 
Www.improvecarenow.com
Especially since your son is so young most gi's have do not have experience with kids under 10 years olds let alone under 5.
For pain have you tried hot packs ?
For eating ask your Gi about enteral nutrition.
It is easier on the gut and let's your son get the nutrients he needs until they dx and get the right med combo for him.
Your Gi should have samples and be able to write a script.
The script can be filled through a durable medical equipment company.
Most insurances have a durable medical equipment clause where they will cover x% this really helps with cost.

In the us the brands are:
Neocate 
Elecare
Peptamen junior
Peptide junior

Some over the counter ones which can work but are harder to digest are
Kids boost and pediasure.
Search for the exclusive enteral nutrition thread most of the company links are there.
More hugs


----------



## Suzysu

:hug:
Gigamis I am so sorry you are on the rollercoaster too. It is heartbreaking trying to deal with a child so young having severe pain - and it doesn't help that many healthcare professionals just don't listen to what you say or often seem to care much. 
At least the Dr you are seeing seems to be taking things seriously, it sounds like he needs to have some scopes to confirm the diagnosis (unless he has had them already). 
Things like heat pads (wheat bags or hot water bottle) on his tummy, paracetamol (not ibuprofen), I use a homeopathic remedy when Freddy is in pain and that sometimes seems to work wonders when everything else seems to fail. You might consider dietary changes ie low residue etc but it is probably best not to mess around with things too much unless your GI suggests it.
I hope you get some answers for your little man soon xxxx

Update on Freddy: - More pink\Maroon poo today, lots of pain, very miserable all day, in severe pain after eating a small amount at dinner -vomited all his dinner up and now is running around like nouthing has happened!!!!:ywow:


----------



## my little penguin

Suzysu
I forget did they do an upper and lower scope on him???
Sometimes in little ones they can have an egid disorder 
Which has a lot of similarities to Ibd but they have to be looking for the EOS-
Eosinophilic cells .

Here is a link
http://apfed.org/drupal/drupal/symptoms_of_EGIDs



> What are the Symptoms of EGID?
> Symptoms may vary considerably, depending on the area affected.
> 
> Symptoms include:
> Nausea or Vomiting
> Diarrhea
> Failure to thrive (poor growth or weight loss)
> Abdominal or chest pain
> Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
> Dysphagia (Difficulty swallowing)
> Food impactions (food gets stuck in the throat)
> Gastroparesis (Delayed emptying of the stomach)
> Anorexia (poor appetite)
> Bloating
> Anemia
> Blood in the stool
> Malnutrition
> Difficulty sleeping


----------



## Crohn's Mom

HI Gigamis, and welcome 

Please, please don't ever feel foolish here ! We all understand your feelings and frustrations. :hug:

You have been given some great advice from Mlp and Dusty already, so I just want to wish you the best of luck and support.
I will also just reiterate , please try and refrain from any use of ibuprofen (nsaids) ~ as others have said, they are not good for anyone with digestive issues.

Hang in there mom ~ we're all here for you!


----------



## Crohn's Mom

Suzysu ~
Lots and lots of hugs !

:ghug::ghug::ghug:


----------



## Suzysu

Thanks MLP!

 They did both upper and lower scopes, said everything looked normal and said the biopsies were also normal (I don't have a copy of the reports). I will suggest EGIDs to them, do you know do they keep the biopsies after they have looked at them - could they look at them again or restain them? 

I just don't get how can everything be normal in a child that has had vomiting and diarrhoea for over a year before the biopsies were taken - Do some people need multiple scopes and biopsies before a diagnosis is made?

  I'm just thinking out loud!


----------



## Farmwife

Yes they keep them for a set time.
I asked the same thing to my doc. We will need to send the biopsies to another clinic that looks for ME of MIBD. I think I heard 16 months? I could be wrong.


----------



## my little penguin

They keep the slides for a while.
We had DS's restained after 6 months for mast cells.
Let me check with some folks there is a place in the uk that specializes in egids .


----------



## gigamis

Thank you all very much . I don't think he has EGID because he only vomits when he cries or coughs too hard and it triggers his gag reflex and even then its mostly a lot of dry heaving. I will start keeping a detailed record of his symptom activity and diet. The last Dr. he saw seemed to take it a bit more seriously, but its still like pulling teeth to get anything else done. I have written down the info on tests in your messages and will be asking about getting some scopes done and start pushing for other tests. The only thing done so far is blood tests and fecal collection for a parasite test. So after that I know he doesn't have parasites and he has markers for IBD or Crohns and that was last June. I have almost completely replaced milk with soy and am wondering if thats a good idea.
:sign0085:


----------



## my little penguin

Did the Gi or ped recommend you replace milk (cow's) with soy???
If its allergic colitis then that may or may not help since most soy milk is cross contaminated with milk protein since at least in the Us they are run on the same manufacturing lines.
If he is lactose intolerant then milk could be an issue but there is a test for it.
Little kids get a lot of their nutrients from milk so if you pulled it you may want to look at a supplement.
In the us there is bright beginning ( soy based ).
Also neocate , e028 splash , and elecare.
E028 splash comes in juice boxes and can be ordered from the manufacturer or script from the doc .
Unless he has been scoped or the doc told you to specifically pull a food I would be hestitant to do it.
It could be the difference of getting a true dx.
Since it can muddy the waters by slightly fixing things and you wouldn't know for sure what you were fixing .
If the Gi thinks it is crohn's I would ask why they haven't done a scope yet since that is standard of care.
Also if it isn't then what does the Gi think it is and what is the time frame to expect him to recover.


----------



## Suzysu

Update - 
Less pain, no more vomiting (but is usually intermittent anyway), very subdued but with short bursts of energy (had to take him to a garden centre while we waitied for hubby to get his leg replastered at the hospital - he walked round slowly holding my hand then sat quietly cuddling his bear in the cafe while I had coffee - that is not normal behaviour for a 2 year old boy in my experience!). Nearly had to call an ambulance when he didn't eat his most favourite foods  (baked beans and potatoes) - he ALWAYS eats those no matter what - but he ate his yoghurt - so I didnt call the blue lights!!
GI nurse says take sample to GP, GP receptionist very grumpy about it and says I have to get it cleared with the GP as I have no paperwork, so waiting for GP to call back  GI nurse says if bleeding continues (how long????) to call her back and he will need to be seen.
I am tired and want to sleep for 100 years and wake up when everyone is well again and I no longer have to organise my life around Drs and hospitals!!! - ok ive put my violin and tissues away now!!!!


----------



## SarahAnne

I've been lurking the last day or two....my son has an upper GI w/sbft tomorrow. After 2 months we finally got in with the only pediatric gastro in town. The peds office did bloodwork that came up "normal" but the GI said given my history he would do more. He said they only did basic labs that might not have shown anything anyway.

My husband wants it to be anything but Crohn's (obviously I do too!) but I think that he is trying to rationalize symptoms away. He is very quick to attribute any stomach pain or bathroom issues to anything else. I understand, but my son is starting pick up on it. If he starts to have pain right after dinner, he'll tell me, "Oh, it's probably just gas." Or the ever popular, "I think I just ate too fast." He is the slowest eater ever!

The GI has also ordered a stool sample, and has made him go lactose free. He also mentioned checking for food allergies. I just want things to move quicker I guess. I had pain my entire childhood, and my mom took me to the doctor a few times over the years but no one did anything. By the time I was diagnosed at 19, my guts were a tangled mess of fistulas and ulceration. I just don't want him to go through that! I'm scared that we'll find something, and I'm scared that we won't.


----------



## Farmwife

Oh SaraAnn that sound like me dear hubby.
I started to put Grace right in front of him when the pains at their worst.
He got the point. Grace's labs are still somewhat normal but now she's pooing blood.
So I really could care less about the labs.
I hope you get answers soon.


----------



## Farmwife

Suzysu,
I'm played the strings off my violin.
Hugs to you and yours.


----------



## Suzysu

Sarah Anne - big hugs - Of course you don't want him to go through what you did as a child but even if he does have Crohn's he won't go through what you did because you are doing something about it now and you are making sure he gets the test's he needs so that if the worst happens and he is diagnosed he won't get to the same state that you did.
I really feel for you - nearly cried when I read your post - sending you lots of strength for tomorrow xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
PS - my hubby is also the same 'its just a bug' - really? for 2 years now? How many 'bugs' can one kid get!!!!
but seriously good luck for tomorrow, will be keeping my fingers crossed that everything comes back ok - please let us know how it goes xx


----------



## Crohn's Mom

Suzysu big hugs for you and keep pushing that GP dear ! I know all too well those feelings of revolving your life around drs appointments ~ no fun at all ! We spend nearly three full years that way; and this past year is a little less, but seeming to pick up speed now argh.  Hang in there ! :hug:

SarahAnne hi   Haven't seen you around in a while :hug:  I can so relate to hearing those excuses of "I just ate too fast" argh ! My middle son still uses those same excuses and refuses to let me take him for any more testing, even tho his uppergi showed he had a narrowing and the radiologist said it looked like Crohn's to him.   He is 18 now tho, so I can't force him; and he's away for a few months too so that doesn't help me trying to persuade.  You are doing the right thing by pursuing testing for your baby ! 
Of course you don't wish this on him, but you are smart enough to know what could happen if he goes untreated.  I remember your personal story from here, and your's was very similar to my daughters :hug:  Hang in there and best of luck tomorrow ! 
We're here for you


----------



## poppets mum

Same here with Hubby (she's overtired which explains screaming and crying in bed at night) and test results that don't show enough to keep the Doctors happy.
Catherine, regarding Fodmap diet,  she is not allowed any wheat spelt, Mannitol,sorbitol,Gluten,fructose,most beans or nuts,most dairy apart from hard cheese,processed food,onions and any spice with onion or garlic powder. Plus certain fruits or veg. I have a 6 page booklet here. The small list of what she can have, has to be in small quantities with meals 6 times per day. (this part not going well at all as eating hurts)Been doing this for one week and so far she is still in same amount of pain/nausea and the occasional bowel movement that either has blood in and dripping blood. Really hoping we see some improvement soon.


----------



## Suzysu

Sarah Anne - Any news? how did the test go? - have been thinking of you.

Freddy passed some very dark poo and remained very quiet, He is still not really eating but poo is now disgusting mucousy diarrhoea that is pink tinged rather than a strong pink colour and he had a massive tantrum at the supermarket (lying facedown on floor kicking legs etc) - so I am taking these as a sign that he is feeling better! He does seem to have a bit more of a spark about him today, just wish he would start eating and stop regurgitating everything he does try to eat! - Hopefully the stool sample will show infection with a virus or something mundane like that!


----------



## Farmwife

I hope things get settled for both of you.
Hugs to you both!


----------



## SarahAnne

The test went fine, Ewan struggled to keep the barium down but he got enough for the pictures. They said everything looked normal, no evidence of inflammation or anything that would suggest Crohn's. We still have labs and a stool sample to return. I don't have the lab slip in front of me, but I know the GI is checking for Celiac markers, H.Pylori, and some other stuff.

My husband was relieved. We went to see him at work after the test. "So everythings normal? It's just anxiety?"

It's a good thing looks can't kill; I'd be a widow today. I told him there were a lot of other things it could be, just because they didn't see anything on one test does not mean it's in his head (or mine!)

He had to go poop halfway through the test. 3 hard tiny pellets. His problem is constipation, and I think he might be having intestinal spasms because he says he feels like he needs to go all the time but nothing will come out. There's no failure to thrive here, he's probably slightly overweight for his height. I'm short, and so is my ex-husband so the height might just be genetic.

If nothing shows up in the blood work or stool tests I guess I will just calm down for a while. There were several days last month where he was crying in pain after eating, and it just scares me to think he might be going through what I did at his age. I know that my husband and mom think I am overreacting, but I will never forgive myself if I ignore symptoms and something turns up later.


----------



## muppet

I don't know your husband and mom, but I suspect they'd like for you to be overreacting more than they actually believe that you are. Of course you should do all due diligence given the family history. Here's hoping it's not IBD of any kind and that it turns out to be something mundane.


----------



## Suzysu

I'm with Muppet on this one! - maybe they act like your overreacting so as not to make the situation worse (Im not sure that makes sense but I know what I mean! - like maybe they don't agree with you all the time so as not to worry and your boy further?), but I expect they are glad that you are taking things seriously and doing everything you can for your boy xxxx


----------



## Farmwife

I'm glad the test came back clear.
There's a lot of things I could write about families but I'm in the same boat you are.
Still something is wrong! It has to be figured out.
We don't have the luxuries of sitting back and saying.... good his test is clear.
We still carry the burden of getting help for them.
Can you tell what kind of day I've been having. Sorry!

I hope you get answers to whatever this is. That goes for all of us.


----------



## my little penguin

Glad the tests were normal.
Fwiw all of my son's tests were normal except the scope.
Hope you get to the bottom of it.


----------



## poppets mum

Wouldn't it be nice if symptoms were normal, to go along with tests? Then no one on here would have anything to worry about.:yrolleyes:


----------



## dannysmom

I so agree with the above posts.  I see that parents of undiagnosed children experience a lot of the same reactions. Keep going Sarah Anne!


----------



## Suzysu

So yesterday Freddy's nursery call me because he is only passing small amounts of mucous, has been sleeping loads, and is clingy and not happy. This morning he passes a large amount of black\very dark green diarrhoea (possitive for blood on the urine dipstick), and is bent over crying (i guess tummy pain), but also has moments of being 'normal' - the faecal results should be back today - If it doesn't show some kind of infection I will totally freak out!!!!


----------



## Farmwife

I've been there. Get in the mind set of......
I don't care what the test says, it's still not right and push for more answers.


----------



## Suzysu

Rotavirus - Hurrah! - been nearly 3 weeks now  - Doc says to stay off dairy as they can get a transient lactose intolerance post viral infection - and Freddy does love his milk poor thing. I can count on one hand the number of times my other 2 combined have had a bug but poor Freddy just gets them all the time bless him


----------



## Farmwife

Ya, for virus!!!!

Wow, who would have thought we be glad for this!


----------



## Suzysu

ok really stupid question but what kind of milk do I give him if no dairy? - soy? rice????? does this still have calcium in it? - I don't want to start restricting his calcium intake he is small enough as it is!!!!


----------



## muppet

How old is Freddy? Maybe Lactaid would work, or some sort of lactose free formulation like Nutramigen (if he's older he probably won't like this, it smells terrible.)?


----------



## Farmwife

We did soy and rice BUT...we love almond milk the best. If you get soy or rice get the vanilla flavor. Kids like that best. But it is made from a nut..just be warned. For the most part you can cook with it.


----------



## muppet

We're big on soy in my house but I've read lots about soy potentially containing or mimicking hormones and now I'm loathe to suggest it until I do more research.


----------



## Suzysu

After the prep for the scopes earlier this year Freddy is VERY suspicious of anything other than milk(normal) or water that I give him he is two and a half so if nutramigen smells I doubt he will take it!! I will pop to the chemist and see what delights they can give me! - Maybe one of the energy shakes\supplements would do him no harm over the next few days - at least that will have all the nutrients he needs in it!! - will also have a look at lactaid (if they have it! - our chemist is a little rubbish!!). - Thanks!!


----------



## muppet

Here in the US, Lactaid is in the supermarket. It's just milk + lactase (or similar) so that the lactose is predigested.

Also: HUZZAH FOR ROTAVIRUS!!


----------



## Farmwife

muppet said:


> We're big on soy in my house but I've read lots about soy potentially containing or mimicking hormones and now I'm loathe to suggest it until I do more research.


That's why we got off it muppet. My hubby studied the effects of GMO soy and it's effects and he said no way and now were soy free.


----------



## my little penguin

Rice milk is not recommend - high in arsenic .
Kids boost would be the best since its complete- lactose free and soy free.
Good luck


----------



## Suzysu

Well the special really expensive soy baby formula milk was spat out in seconds - redecorating the kitchen with a resounding 'I no like mummy', and sadly the almond milk went the same way soon after!! (however he did take the almond milk in his cereal this morning - no problems!!).
I now have the damn virus and I can say I totally understand why he is not eating and is so grumpy owwwwwwwwchy abdo spasms!! He is has had a lot of pain today but NO BLOOD!!!!! YAY!!

PS chemist would not give me any of the nutritional shakes or whatever you call them - I guess you need a prescription for them, there were a few convalescing type drinks but they were all milk based.


----------



## Crohn's Mom

:hug: Suzysu :hug:

I feel so bad for you ~ nothing worse than catching something in the middle of trying to take care of a sick little one :ymad:

I think I've had a similar bug this week myself, but I don't have any little ones running around spatting out yucky "milk", or projectile vomiting anymore :lol:

Hang in there and I hope you feel better soon ! :ghug:


----------



## Suzysu

:ylol2:
Ok - I guess you are all familiar with the phrase 'I spoke too soon'!!

So Freddy had a ton of disgusting liquid, blood tinged diarrhoea before dinner, he did eat a small amount of pasta and tomato sauce for dinner.

 After dinner I decided to attempt to 'manage' 3 excited small children in putting up the christmas tree etc in our Lounge. Mid way through trying to put on the christmas lights with the 'help' of my 4 year old Freddy decided to start vomiting, our lounge has a cream carpet (not my choice - from the previous occupants of the house, but as we cannot afford a new carpet I am anxious to keep it clean). In my panicked attempt to limit the potential tomato stain I grabbed Freddy and carried him through the hall and into the kitchen - while he vomited all the way - this was not my best idea as you can imagine. While I was cleaning up the copious mess and dealing with Freddy my other two carried on 'decorating' - I will leave the state or our downstairs to your imaginations!!!!

  Poor Freddy he has been so miserable all day - this virus is just going on forever (2.5 weeks now). Hopefully tomorrow will be a better day!!:confused2:


----------



## DustyKat

@SarahAnne :hug: I am so sorry to hear about your boy, bless him. I can't even begin to imagine what you must be going through when you also have this disease, it must be so very overwhelming. Sometimes for the significant loved ones in our lives, and I don't mean for this to sound flippant or disrespectful, they have the 'luxury' of retreating into denial as a way of coping with what may be the awful truth but someone has to tackle the issues head on and that someone is you. :hug: 
If I were in your shoes I would be doing the same thing. Doggedly pursuing until you have a solid answer one way or the other. I know full well you find no joy whatsoever in putting your lad through tests but I also know that knowing what you do you couldn't live with him having to endure years of unexplained symptoms. :hug: 
Sending loads and loads of love, luck and healing thoughts your way. :heart: 

@Suzysu - Oh my goodness, what an awful time you are having and poor little Freddy, bless his cotton socks...:hug: Thank goodness the issues can be explained away as a virus! YAY! But it sucks that you are now both dealing with it...bleh!  I hope you both are soon over it and starting to feel fab...:getwell:

The milk of choice for Sarah at this point in time is oat. I don't know that Freddy would think it was the ants pants though! :eek2: 

Good luck guys, :Karl:
Dusty. xxx


----------



## Pavsky

Hie there! I have had Crohn's for 15 years, and I have 4 kids. My youngest son, Aman, was diagnosed just last year at age 7.5 with having Crohn's too. His early symptoms were returning low grade fever despite repeated antibiotics, eczema around the eyes, oral ulcers, abdo pain and eventually he had erythema nodusum, lesions on his legs. Prior to all this happening he had a bad case of conjunctivitis. He was also not gaining weight and very tired all afternoon. Eating was a chore, and he developed gastritis. He was asked to try a drink called "Modulen" with no food for 8 weeks, and he managed it, and all his symptoms went away. His ESR was 80+, it went down to 15. All his blood work is normal, including iron levels which went up. He is doing well, but not on any meds at the moment. The doc said to wait and see as some kids just remain well. I pray he does. My other 3 kids (two older boys and a girl) are well so far. I pray they remain so. I hope all of your kids stay well. Big hugs to all Mums.


----------



## Farmwife

Hi and welcome the the forum.
Sorry you had to find your way here.
I know more wonderful parents will be around to give there advice and support.
My only word of caution is that crohn's can fester. Meaning your dear son looks well but inside the inflammation can be causing lots of damage. So please be careful with that.
But I'm so glad he's feeling well.


----------



## Farmwife

Suzysu said:


> :ylol2:
> Ok - I guess you are all familiar with the phrase 'I spoke too soon'!!
> 
> So Freddy had a ton of disgusting liquid, blood tinged diarrhoea before dinner, he did eat a small amount of pasta and tomato sauce for dinner.
> 
> After dinner I decided to attempt to 'manage' 3 excited small children in putting up the christmas tree etc in our Lounge. Mid way through trying to put on the christmas lights with the 'help' of my 4 year old Freddy decided to start vomiting, our lounge has a cream carpet (not my choice - from the previous occupants of the house, but as we cannot afford a new carpet I am anxious to keep it clean). In my panicked attempt to limit the potential tomato stain I grabbed Freddy and carried him through the hall and into the kitchen - while he vomited all the way - this was not my best idea as you can imagine. While I was cleaning up the copious mess and dealing with Freddy my other two carried on 'decorating' - I will leave the state or our downstairs to your imaginations!!!!
> 
> Poor Freddy he has been so miserable all day - this virus is just going on forever (2.5 weeks now). Hopefully tomorrow will be a better day!!:confused2:



:shifty-t:My son was throwing up years ago and without thinking I rushed him to the kitchen sink and let me vomit there. I still hadn't done the dishes.

Is Freddy any better?:rosette2:
 Grace has been having an ok week-end. Nothing like getting some family time to cheer us up.


----------



## Pavsky

Forgot to mention that he's been having regular check ups and blood work, so we are monitoring him. Having lived with Crohn's for 15 years myself I am aware that it festers  thanks for the reminder and the good wishes.


----------



## Suzysu

pavsky - I am glad that your son is doing well at the moment - and long may it continue!! I am sorry though that you have had to deal with both yourself and your little guy having crohns, at least you have been through much of what he has gone through so are best placed to help him. 

FW - He is still pretty miserable, still got disgusting diarrhoea, and not eating much but he has taken a little of the almond milk so that is good. Just freaking out about his height charts -has dropped quite a few centiles I wonder if his last reading was a mistake though as I measure him a few cm below it - and I don't think children can shrink height wise!!!!
Glad you are having a good weekend, get some rest while things are going well and enjoy that precious family time!! xx


----------



## Suzysu

Dusty - we need a santa smiley!! xx


----------



## my little penguin

Hope your day is better.


----------



## DustyKat

Oh so many choices:

Dancing: 

	
	
		
		
	


	





Waving: 

	
	
		
		
	


	





Eating: 

	
	
		
		
	


	





Naughty: 

	
	
		
		
	


	





Crazy: 

	
	
		
		
	


	





Dusty. :ybiggrin:


----------



## Crohn's Mom

thanks Dusty !
and of course...Naughty Santa is my favorite ~ but Crazy takes a close 2nd!
:rof:


----------



## happy

Bad, bad Dusty. Naught but coal in your stocking this year! 
Hilarious.


----------



## my little penguin

Love the santas


----------



## DustyKat

happy said:


> Naught but coal in your stocking this year!


Oh man...not even a cotton reel to go with the coal???


----------



## happy

What is a cotton reel?!


----------



## DustyKat

What cotton is wound onto.


----------



## izzi'smom

I'm going to guess a cotton reel can be considered a toy in some parts, so no.


----------



## Farmwife

:shifty-t:I call that thread where I'm from. Is it used for something else where your from?


----------



## jmckinley

That's a "spool" in Alabama :biggrin:


----------



## DustyKat

jmckinley said:


> That's a "spool" in Alabama :biggrin:


We have spools here too...it's what those that have partaken a little too much in the demon drink call a pool. :ybiggrin: 

Not sure what you mean Farmwife, except for thread, I know what that is...maybe I am pissed and need the spool! :lol: 

Hmph, well you can just have the naughty Santa Angie for being a Bah Humbug! :ylol2:


----------



## izzi'smom

:rof:


----------



## Crohn's Mom

Holy cow ~ patience really is good sometimes ! :ylol2:

Just returned from JJ's GI visit.
We went over all of his persisting symptoms and she's paying attention!
He is scheduled for a Upper GI w a small bowel followthrough this Friday.
She has also ordered a Fecal Calprotectin / Lactoferrin test.
And, depending on the results of the upper GI, she is going to do a PillCam.  We just have to make sure he doesn't have any signs of a stricture first. 

She also agreed that he needs a higher dose of Omeprazole, so now he is going to try 20mg, twice a day, for 8 weeks and if that helps than prn. 

No bloods ordered just yet since he just had them done in July by his Endo. I'm ok with that for now.

Interestingly we also discussed in depth how Gab is doing now since she hasn't seen her since we switched to the Mayo Clinic.  We both think that gab should try 8 weeks of exclusive EN to try before any thoughts of possible surgery again.  I'm going to discuss this with Gab and see how she feels about it, and then we can present this idea to her GI and see how they feel about it.

I'm very happy that I didn't feel l like she thought I was over reacting, or neurotic, or whatever this time around; as a matter of fact I almost got the feeling that she's more concerned about possible IBD with JJ now than I am ? :lol:

At least the ball is rolling in the right direction again


----------



## muppet

Statistically odds of a sibling also having IBD is around 30% I think. Decent reason for care to be taken.


----------



## Crohn's Mom

Oh ya I knew this muppet , but there's that part of me (like you and your girls) that is hoping that since they have different fathers then there's less chance.


----------



## muppet

Ah, fair enough, and I hope so, too of course!


----------



## my little penguin

Hugs glad the Gi visit went well.
If the upper is clear I would still push for a scope/ pill cam combo.
For DS that was the only way we found he disease through biopsies.
All other Tests looked clear and good especially if you are catching it early.
Plus with the scope they can place the pillcam where they want it.
Hugs


----------



## Suzysu

glad the GI visit was productive and glad she is taking you seriously, and good luck for Friday - let us know how it goes xx


----------



## Farmwife

YA!!!! For good GI appointments.
I hope you get answers soon


----------



## Crohn's Mom

Thanks mlp 
He was scoped a little over a year ago - upper and lower - there was (non specific) chronic  inflammation in all areas. 
She wants to do the pill cam - especially if the upper GI doesn't show us anything. Just have to be sure there's no sign of a stricture first. 
She did mention she may have to scope him again, but I think she's trying to do less invasive tests first


----------



## my little penguin

Not to discount your doc but how did they treat the chronic unspecified inflammation they found last year?
I would still push for a scope / pill cam since they know he had previous inflammation going on.
Did they have an explanation for the inflammation ?
Did they do an eosinophilic count on the biopsy slides ?
If they caught the disease early there may not have been ulcers yet( DS does not have any)
The only reason we got the Ibd crohn's dx was due to the granulomas found- which is hit or miss on biopsies. DS's first scope looked visually normal .
I would really push for both and then a game plan on how to stop the inflammation .
I would not want to wait for damage to first ptove he had the disease or worse wait until they found a granuloma.
Hugs.


----------



## my little penguin

> How is IBD different from Irritable Bowel Syndrome?
> IBD develops due to inflammation in the intestine which can result in bleeding, fever, elevation of the white blood cell count, as well as diarrhea and cramping abdominal pain. The abnormalities in IBD can usually be visualized by cross-sectional imaging (for instance a CT scan) or colonoscopy. Irritable Bowel Syndrome (IBS) is a set of symptoms resulting from disordered sensation or abnormal function of the small and large bowel. Irritable Bowel Syndrome is characterized by crampy abdominal pain, diarrhea, and/or constipation, but is not accompanied by fever, bleeding or an elevated white blood cell count. Examination by colonoscopy or barium x-ray reveals no abnormal findings.


From:
http://patients.gi.org/topics/inflammatory-bowel-disease/#tabs3




> How is CD diagnosed?
> There is no single test to confirm the diagnosis of CD. Instead, multiple tests are usually used in combination to help arrive at the diagnosis depending on the symptoms that lead individuals to seek care. Ultimately, a colonoscopy or flexible sigmoidoscopy must be performed to directly visualize the intestine internally and to obtain small tissue samples (biopsies) for evaluation under the microscope. Other imagines studies can be used in conjunction with a colonoscopy to help in the evaluation including a barium enema, upper gastrointestinal series (UGI series) with small bowel follow through, computerized tomography scans (CT scans or 'cat scans'), magnetic resonance imaging (MRI) or a pill camera study (capsule endoscopy) but are not mandated. Blood tests which look for antibodies and markers of inflammation along with stool specimen tests for hidden blood and infection may also be used to help confirm or exclude the diagnosis of CD


----------



## Crohn's Mom

> Not to discount your doc but how did they treat the chronic unspecified inflammation they found last year?


No.  She prescribed Prilosec for 2 weeks. 
Don't worry about discounting the doc, or putting your two cents in with me, I don't mind a bit.  And trust me ~ it has been a crazy roller coaster ride of opinions/questions/emotions with me and this ped GI. I have gone back and forth sooo many times ~ quite a bit of it in the beginning of this thread.
I actually read through the first 8 pages of this again today and it brought back so many memories of my feelings and apprehensions 
Regardless, I made the decision to go back to her again for now..right or wrong ya know.  But I have NO problem with someone disagreeing with me ~ I am here not only to get support, and give it as well, but also to LEARN. 



> I would still push for a scope / pill cam since they know he had previous inflammation going on.


I will push for the pill cam as long as there's no sign of a stricture/narrowing.  After that, if we still don't have acceptable answers than I will either push for another scope, or will follow through with my thoughts of another opinion from a children's hospital GI. ( I have admittedly been very wishy washy with this as well)



> Did they have an explanation for the inflammation ?


 If I remember correctly, she said it could be from soda ? :confused2:




> If they caught the disease early there may not have been ulcers yet( DS does not have any)
> The only reason we got the Ibd crohn's dx was due to the granulomas found- which is hit or miss on biopsies. DS's first scope looked visually normal


Gab had granulomas all throughout her digestive tract with her first scopes at 9 yrs old and unfortunately still wasn't diagnosed until 16.  JJ's biopsies did not show granulomas , only mild chronic inflammation.



> I would not want to wait for damage to first ptove he had the disease or worse wait until they found a granuloma


I live with the fear every day that something is festering in him, as it did his sister.  However, I did take a step back from all the doctors and the testing to take time to "watch".  I was very concerned that I may have been "projecting", as at the time of my first suspicion my middle son was also starting to show symptoms as well. Also, Gab had just had her first surgery and had a temporary ileostomy unexpectedly placed a few months before.  
I look back on my posts from when I started this thread and think 2 things...

1) I had VERY valid reasons for pursuing a diagnosis with both of my sons
2) I was VERY stressed out and overwhelmed and scared  ~ and neurotic ~ out of my mind that my boys were sick too and I was going to do everything I could to make sure they (doctors) didn't "miss" it like they did her sister 

So here I am again pursuing answers.  I am much calmer as far as "immediate fear".  Whereas I would hate the thought that he is much worse on the inside than he even feels, there's nothing I can do to change the path we have already gone down.  All I can do is try and keep my anxiety about it all under control, and take it one day at a time 

Sorry this is so long MLP, but I felt you ( and others) deserved an explanation as to where I am coming from :kiss:
But please...by all means, keep pushing me and asking questions and giving your wonderful advice ! I truly appreciate it and it helps me think ! 
:ghug:


----------



## Suzysu

Crohns mom - :ghug:
I am not a Dr nor am I as experienced with crohns as most of the people on this forum but I thought that if you had a person showing GI signs and they had granuloma's on their biopsies that was pretty much diagnostic for IBD? I don't know the full story but I am so sorry that Gab didn't get diagnosed the first time - I actually can't believe it - I hope you sued the ass of the Dr that missed it and I hope that they are no longer in practice (I am assuming that this is not the same Dr that you are seeing with JJ?).
  I totally understand when you talk about not wanting things to get missed but not wanting to rush into anything either - it is a tricky balancing act - and it sounds like you have the insight to monitor JJ's condition and to raise concerns when it is needed. I hope you get some answers with the less invasive tests - sending big hugs to you and your family :ghug:


----------



## Crohn's Mom

> I am not a Dr nor am I as experienced with crohns as most of the people on this forum but I thought that if you had a person showing GI signs and they had granuloma's on their biopsies that was pretty much diagnostic for IBD?


From my understanding at the time granuloma's are indeed indicative of Crohn's disease, however they are not specific to CD.



> I don't know the full story but I am so sorry that Gab didn't get diagnosed the first time - I actually can't believe it - I hope you sued the ass of the Dr that missed it and I hope that they are no longer in practice (I am assuming that this is not the same Dr that you are seeing with JJ?).


Ok ~ this may upset some people, but I'm an honest person so I will just say it~ Yes, JJ is seeing the same GI.
NO, no law suits.
I am ok with this for now.
I will attempt to explain, and hopefully it makes sense 

Recently back in November when I had to take Gab to the ER at Mayo, I guess her and I both had an AHA moment of sorts ?
We went in thinking that the sores on her resection scar were infection, or old sutures coming through. 
We left with the knowledge that it was actually two fistulas 
That being said, on the way home we started talking about her bad luck, this crazy disease, etc.  We were in such disbelief that her disease was back so soon, and SO aggressively AGAIN.
That led us to bringing up her old ped GI ~ we started discussing the roller coaster ride we went through trying to get her diagnosed, and then getting her into remission, and now were right back on that ride.
We discussed the vast amount of meds that she has been on that have failed her, all the hospital admissions, tests, doctors appointments, etc.  We discussed all of the doctors we BLAMED for her being such a mess inside when she finally had her first surgery.
Then one thing led to another and I was like hey, you know what ~ we have you in one of the top hospitals in the world, with a team of amazing doctors now.  They have given you and your case amazing attention and medication and research and surgery and after care and now look at you.  It's ALL back, and just as aggressive as it was when the ped GI was trying everything she knew how to help you.
We came to the conclusion that this was NOT all the previous doctors fault ~ its the damn diseases fault ! The amazing doctors she has NOW can't keep her disease from raging through her and they have every means available !

Anyhow, while I do still have many reservations about the doc still, I don't believe she was "liable".  It's a VERY long story as to everything gab went through getting to this day, from when she was 9, and I couldn't possibly put it all here.  But, I am comfortable right now letting this doc run the tests on JJ, the same tests that any other doctor would be doing at this point with him.  Also, she knows Gab and her case very well and that is to our benefit at this stage in the game.
I don't intend on staying with her if he is diagnosed, but I'm not positive.  She's usually willing to listen to us and is not opposed to discussing treatment and how WE feel about it and what WE want.  I honestly wasn't educated enough on CD when gab was 9 to question things too much; so if I were to blame it ALL on that doc, than I am just as liable for Gabs illness quite frankly. :yrolleyes:

I hope that all makes sense ?  Sorry, I didn't mean for this post to be this long either ~ trust me I could have gone on babbling much longer :lol:


----------



## my little penguin

Glad you got her help and are looking into JJ.
There are only two reasons for granulomas in the intestine. 
Ibd and wegners granulomtous ( sp?) - kids have low immune systems constantly sick etc... 
We had this explained to us by a very well known Gi when we took DS for a second opinion about whether he even had Ibd since there were no ulcers just inflammation and granulomas.

After the pillcam please look for a second opinion Gi at least since the first one may not be as informed about odd presentations as your lo may need.

As you said the disease is still ugly but 2nd and 3rd opinions are really helpful . They have been for DS.

Llater when I get off the phone I will post the paper that states there are the only two things that can cause those.


----------



## Farmwife

It makes sense to me Tracey, but then again ......:shifty:
I reason with a three year old on a daily basis.:redface:

I hope you get the answers you need for both of them.
:heart:Hugs:heart:


----------



## my little penguin

Opps - forgot the one important detail there are different types of granulomas that can be found in the Gi tract . So for the noncasesting ones DS had well Gi said it could only two things and he didn't have the other one.
Your dd granulomas may not have been that type.


----------



## Suzysu

Crohn's mom if I were a millionare I would charter a plane over to the US just to come and give you and your family a hug!! - you are an amazing person :ghug: Given the same situation I just don't know if I could do the same - but would strive to do so. I hope JJ's tests go ok, I will keep my fingers crossed for you guys xxxx


----------



## Crohn's Mom

Suzysu you're so sweet  
Thanks a bunch!

:hug:


----------



## dannysmom

my little penguin said:


> There are only two reasons for granulomas in the intestine.
> Ibd and wegners granulomtous ( sp?) - kids have low immune systems constantly sick etc....


I've read that certain bacteria can also cause granulomas ...

and now I just read your follow up on differnt types of granulomas 
thanks


----------



## Farmwife

Suzysu said:


> Crohn's mom if I were a millionare I would charter a plane over to the US just to come and give you and your family a hug!! - you are an amazing person :ghug: Given the same situation I just don't know if I could do the same - but would strive to do so. I hope JJ's tests go ok, I will keep my fingers crossed for you guys xxxx




That's sweet Suzysu but...:shifty:
I mean what are we? Nothing to you?
Ok, whatever.
We write you nice things.
Fine, so be it.
I pm all the time and ask about Freddy.
But take a flight to visit her. Hope you have fun.
The rest of can sit here and feel like chopped liver.
Like I said whatever! 
I mean when you favor the one you hurt the others,
but if your OK with that.



:rof::rof::rof:


----------



## Crohn's Mom

Attention Parents:

For the record, 
When you're child gets scheduled for an Upper GI w/ Small Bowel followthrough, and a stool test ~ when they (the child) comes to you after you are home, and the Upper GI is over and says btw mom, I need to poop should I do the stool test now ? The answer is NO ! :rof::rof:

I'm quite sure the lab is not interested in checking your expelled barium !! 
:rof::rof:

( I can't believe I said yes to this...:ywow:....obviously experience means nothing in my world LOL)


----------



## Suzysu

OK ok ok ok FW - I would also charter a plane to your house, take you and your family out for a fancy meal, and look after your kids while you had a relaxing spa day.
Happy now?
xxxx


----------



## Farmwife

That's all I'm asking!


----------



## DustyKat

I knew T! I just knew when I started reading your update yonks of posts back! You are still with that fecking GI!!! :rof: Seriously though I hear you about what you were discussing but I dare ya to tell me she isn't going the whole hog with JJ because she has a guilty conscience?! :lol: All you will have to do now when she strays from the straight and narrow is mouth the word Gabs and she will be in the corner in the blink of an eye plucking her eyelashes out! 

Good luck mate...:hug:...I hope you get solid but simple an easily treated answers for JJ. I wish it with all my heart. :heart: 

Dusty. xxx


----------



## izzi'smom

LMAO at the barium sample. I always forget to hit up this thread...so sharing some love, T...and a hug! XO!
We got checked by infectious Disease for another disease causing granulomas (just because Izz was presenting SO much like UC and we were facing surgery...can't remember what we were tested for now...losing my memory like Dusty!


----------



## rhosymynydd

Just for calorific value, the doc prescribed Nutricia choc puddings, each small pot has 200 cal. they also come in vanilla but taste awful. Have you ever considered goats or sheep's milk? It is now quite easy to obtain in the UK although goats milk smells if it is made from a farm that keeps billy goats as well. There is a distinct difference in flavour and taste so try and buy a commercial brand rather than a "local" farm variety due to the taste aspect only.  Goats milk is also available on prescription as it is expensive. http://www,thebowelmovement.info also try linking up with mums at http://www.champsappeal.co.uk, they have a lot of kids with the same dietary problems, based in Wigan but worlwide members.


----------



## Crohn's Mom

If stool samples for tests are collected in the evening- what are you supposed to do? Refrigerate ? Or leave them at room temp? 
Help ! LOL


----------



## Farmwife

Fridge.:hug:
 I had many in time past over night. Poor hubby, tired and thinks he's grabbing katch-up.:rof:


----------



## rhosymynydd

This is the nutricia coding for the choco puddings (that really taste ok - like the original baby choc puddings) for prescrption only  are: Forticreme complete choco code: 65621. They have "high calorific value, gluten free, high energy, nutrionally complete" and are recommended for Crohn's colitis children and adults, without them my weight loss would have been dreadful and I know 2 local crohn's kids who are thriving on them, which is how my dietician knew about them. Also contains vit d. (plus others). There is also a variety of soups now on prescription with the same calorific value but cannot trace the manufacturer as they changed the name last year, they did chicken and a veg variety - hope this might help.


----------



## DustyKat

Probably too late now T but it depends on what they testing for: 

If it is for infection and/or parasites then you refrigerate but you can always err to caution and refrigerate anyway. 

Dusty.


----------



## Crohn's Mom

Thanks Dusty and FW 

There were two of them that didn't need refrigerated for sure, ( i had directions for those) but the other 3 tubes didn't have any directions so I had no clue.  Hopefully I didn't screw them up :stinks:


----------



## Suzysu

5 tubes - WOW!!!! that's a lot to fill!! - how long will it take to get some results? xx


----------



## Crohn's Mom

That's what I thought Suzy! LOL 
I'm assuming less than a week for result ?


----------



## Suzysu

I suppose it depends what they are testing for, Freddy's last sample was handed in on Monday and the results were back by Thurs\Fri. - Hope you start getting some answers soon! xx


----------



## Crohn's Mom

Just a quick update to say jjs upper GI was completely normal


----------



## my little penguin

Wonderful cautious news.
I am jaded since DS first upper Gi sbft was the first time I ever had heard the word crohn I reference to DS as in we were extremely lucky they could tell us right then crohn was definitely not something he had to worry about .


----------



## Crohn's Mom

> Wonderful cautious news.


My sentiments exactly !


----------



## Suzysu

Crohn's mom - YAY!
MLP - YAY!

hugs to everyone!


----------



## Suzysu

:ymad::ymad::ymad::ymad:
just got back fro Freddy's GI app, he has lost 700g since last app, continues to have diarrhoea with lots of yellow mucus, and often has pink\ dark red BM's despite me removing everything red\pink from his diet.
Freddy has episodes of severe abdominal pain lasting 10mins or so and other episodes where he is miserable for several hours. He never has these episodes at the hospital and today was giggly and cheeky during our appointment! (which bearing in mind I had just written an A4 page of how ill Freddy had been and how I was worried about him and how I didn't think that as this has been going on for 4 weeks it could just be a virus - was actually not helpful).
The Dr thinks Freddy has a dysmotility problem and went on about possible diet, meds, barium investigation blah blah blah. but as he has just had the virus and probable lactose intolerence we are not going to do any of that and are just going to wait and see AGAIN.
I don't think the Dr thinks that Freddy does have blood in his stool.
I know he is right to wait and see it just seems like we are going through this continous cycle of wait and see, Freddy gets better,Freddy gets worse, Freddy looses weight, Freddy puts it back on, and I just think well how long can we 'wait and see for?' This has been going on since Freddy was 5 months old and he is now 2 and a half. But at the same time I know if the Dr was concerned he would do something, and any investigation he has had has been normal (except for the low iron and anaemia) - I just know this isn't normal and I hate to see him in pain but I don't know what else I can do to help him.
Sorry I ust feel so depressed about it all and feel like I am going totally mad.


----------



## muppet

I think it's good that he's being cautious with such a little patient. I can certainly understand the frustration, though. I don't know Freddy's whole history, but it _sounds_ like the doc knows what could be done and is trying not to be overzealous and cause more issues.


----------



## Suzysu

Thanks Muppet - you (and the Doc) are totally right! I think I am just tired and finding it hard to deal with everything that is going on at the moment (stuff other than Freddy!), If the Doc thought it was anything to worry about he would have advised more tests etc and I should take that as a very positive sign! Thanks! xx


----------



## muppet

Well, you should always trust your instincts and if you think the doc is being too cavalier or not responding appropriately to Freddy's needs, you need to take him to task or find a new doctor, but it doesn't sound like you're at that point, to me, based on your last few posts anyway.


----------



## Farmwife

Hang in there Suszy. Your doing a great Job.

muppet- Are you the lite in a dark world; or are you the darkness and WE bring lite into your world????


----------



## muppet

The school shooting today in Newton CT was just a few miles from my home. We don't know the victims but we're pretty upset.


----------



## Farmwife

Yes, isn't that horrible. My heart breaks for one and all.


----------



## Suzysu

Didn't hear the news last night, so only heard about it the morning - totally shocking -thinking of all the affected families.


----------



## Crohn's Mom

Got a voice mail from the GI nurse today....JJ's stool tests were all normal/negative.
Those are including the fecal calprotection test.

I am happy to hear this. 

When we went for his first follow up appt. the other day with the Endo doc, he had grown an inch and a half since starting his HGH this past end of August; 
So...I'm not sure what to do, or where to go from here, but I have decided to delay the pill cam test for now.
With these "normal" test again recently, I don't want to traumatize the kiddo ya know ?

He has a follow up appointment in a month + so I will keep track of his symptoms until then and see how he feels at his appt. then. 
My biggest concern is his headaches the last few days ~ they are bad enough that he is complaining quite a bit, so I will keep a close eye.

We were warned about headaches when he started the HGH but it hasn't been an issue since.
I have a theory tho...
Do you think that his body has finally started to produce his own growth hormone so therefore, his dosage may possibly need lowered now and thats whats causing the headaches ? 
He's not due for blood check for a couple of months to check his IG-1 (?) levels, but I could always request it be done sooner if the situation requires it.  
Uggghhh....
I am honestly so confused with him lately.
I am starting to convince myself that the HGH could be helping his "digestive issues" and maybe I should back off of any further medical investigations ?? 

Just having a moment maybe....??


----------



## muppet

I'm only speculating based on very little knowledge, but my intuition would be that if HGH was going to have any effect on Crohn's, it would be to exacerbate it rather than resolve it, since it's an immune booster. Don't be lulled, keep an eye on things.

I totally get not wanting to go full bore into more testing when you just want to give the kid a rest. Just be vigilant.

EDIT - as it turns out, looks like there was a study back in 2000 talking about using HGH as therapy for Crohn's, specifically for short bowel syndrome for those who had been resected. Haven't found anything more recent yet.


----------



## dannysmom

Hi T. I'd be thinking the same things ... and would be just as confused!
Danny has now been sick for 4 years ... and we have no clue still. His follow up with his GI is next week. The last month has been a slow progression down hill with more ab pain and more fatigue. (D still there a couple times a day). Jaw pain started a few days ago (for no apparent reason as always). He missed school yesterday & today because of the ab pain & he came down with a cold. It is so disheartening having an undiagnosed child for so long.


----------



## muppet

Hmm I don't know Danny's whole story as I haven't read it yet, but looking at your sig, is the lack of response to prednisone one time the only reason the dx is being questioned? Prednisone usually, but doesn't always work. Sarah had a very scary period where it stopped working entirely and that's how we briefly ended up on Remicade.


----------



## muppet

Oh my goodness I just read your story link.  I'm so sorry that Danny has had such a rough time of it. Is there any utility in looking into Mayo, or Cleveland or something, for him?


----------



## my little penguin

Dannysmom -Yes what muppet said - DS first round of pred did not help at all.
Apparently not high enough of a dose long enough etc...
Second time helped some but still not enough for 3 months .
It wasn't until he was on remicade a while (8 weeks)after being on pred for 3 months that he actually got better.

No one knows why but the whole thing finally worked .

Ever try h1/h2 blocker combo or cromyln since it can stop unexplained stomach pain.


----------



## dannysmom

Thanks Muppet and MLP. It wasn't a lack of repsonse to prednisone, but an extremely negative response. I asked about possibly trying another steroid but the GI did not want to risk it. He has tried some H1 blockers (ie claritin) and H2 (zantac) without any benefit. I mostly think we've exhausted all of the standard medical options (by seeing >30 doctors at children's hospitals like Columbia/NYP, Mount Sinai NY & Johns Hopkins; and researching options myself for way too long now) ... I wonder if Mayo or Cinn would do anything different. Good news is he is not that bad ... and we keep an eye on that closely. Some treatments have had negative impact that lasted for months and his current GI feels he is not quite desperate enough to try biologics. Thanks again for your support ... and encouragement.


----------



## Suzysu

:confused2::confused2::confused2::voodoo:
2 weeks no vomiting, mostly diarrhoea but a few normal poo's as well, minimal painful episodes - last night bending over and crying in pain, holding hands over lower abdomen, lying on foor (head down and bottom up - odd position) crying with hands on tummy. Today very unhappy all morning, looking pale, coughing (normal for him), vomited up all lunch (but managed to get him to the bathroom just in time - hurrah!!).
Another virus? when is this endless cycle going to stop? Sorry just needed a quick vent - feel better now!!


----------



## my little penguin

Have they considered cyclic vomiting syndrome for him?
Looked at mitochondrial disorders ?


> What is cyclic vomiting syndrome (CVS)?
> CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days, that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related (see CVS and Migraine).
> Each episode of CVS is similar to previous ones, meaning the episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity. Although CVS can begin at any age, in children it starts most often between the ages of 3 and 7.
> Episodes can be so severe that a person has to stay in bed for days, unable to go to school or work. The exact number of people with CVS is unknown, but medical researchers believe more people may have the disorder than commonly thought. Because other more common diseases and disorders also cause cycles of vomiting, many people with CVS are initially misdiagnosed until other disorders can be ruled out. CVS can be disruptive and frightening not just to people who have it but to family members as well.
> [Top]
> The Four Phases of CVS
> CVS has four phases:
> Symptom-free interval phase. This phase is the period between episodes when no symptoms are present.
> Prodrome phase. This phase signals that an episode of nausea and vomiting is about to begin. Often marked by nausea—with or without abdominal pain—this phase can last from just a few minutes to several hours. Sometimes, taking medicine early in the phase can stop an episode in progress. However, sometimes there is no warning; a person may simply wake up in the morning and begin vomiting.
> Vomiting phase. This phase consists of nausea and vomiting; an inability to eat, drink, or take medicines without vomiting; paleness; drowsiness; and exhaustion.
> Recovery phase. This phase begins when the nausea and vomiting stop. Healthy color, appetite, and energy return.


From:
http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.aspx



> Possible Symptoms
> Brain
> 
> Developmental delays
> Dementia
> Neuro-psychiatric disturbances
> Migraines
> Autistic Features
> Mental retardation
> Seizures
> Atypical cerebral palsy
> Strokes
> 
> 
> Nerves
> 
> 
> Weakness (may be intermittent)
> Absent reflexes
> Fainting
> Neuropathic pain
> Dysautonomia - temperature instability&
> other dysautonomic problems
> Muscles
> 
> Weakness
> Cramping
> Gastrointestinal problems
> Dysmotility
> Irritable bowel syndrome
> Hypotonia
> Muscle pain
> Gastroesophogeal reflux
> Diarrhea or constipation
> Pseudo-obstruction
> Kidneys
> 
> Renal tubular acidosis or wasting
> 
> 
> Heart
> 
> Cardiac conduction defects (heart blocks)
> Cardiomyopathy
> 
> Liver
> 
> Hypoglycemia (low blood sugar)
> Liver failure
> 
> Ears & Eyes
> 
> Visual loss and blindness
> Ptosis
> Ophthalmoplegia
> Optic atrophy
> Hearing loss and deafness
> Acquired strabismus
> Retinitis pigmentosa
> Pancreas & other glands
> 
> Diabetes and exocrine pancreatic failure
> (inability to make digestive enzymes)
> Parathyroid failure (low calcium)
> 
> Systemic
> 
> Failure to gain weight
> Fatigue
> Unexplained vomiting
> Short stature
> Respiratory problems


From:
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631


----------



## my little penguin

For mito anytime more than one system is affected it needs to be considered.


----------



## Suzysu

They did consider CVS but I think they dismissed the idea because of the more or less constant diarrhoea, although he will have the odd normal poo, he never has a 'clear run' of normal poo's if you know what I mean, I think he has had a total of 4 weeks (split into 2 lots of 2 weeks) in the last 18 months where he has been more or less symptom free.
I hope it's not a mitochondrial disorder they all sound very scary and difficult to diagnose - I dismissed them as I don't think he is ill enough, but the coughing has started to worry me. My middle child has asthma so maybe it's just a mild form of that (he doesn't wheeze and the coughing is no where near as severe as my middle child had it before all the meds).
Thanks xx


----------



## my little penguin

You can have asthma and never wheeze .
My oldest has that.
Uncontrolled asthma can cause vomiting.
Mito is hard to dx 
Hugs


----------



## Suzysu

I am off to my parents of Christmas so may not be able to check the forum to see how everyone is - so I just wanted to wish you all a merry and healthy Christmas!!!! I hope everyone's tummies behave themselves enough for everyone to have a great few days xxxx


----------



## Crohn's Mom

Thanks suzysu ! Hope you enjoy your holidays as well ! :ghug:


----------



## Farmwife

Have a great time at Christmas Suzysu. 
I hope you know your a great treasure to this forum and we'll miss you while your gone!


----------



## DustyKat

Thinking of you T, Suzysu and dannysmom. :ghug: :heart: :ghug: 

I have known the pain and uncertainty of an undiagnosed child and my heart goes out to you and all you and your children are going through. 

Dusty. xxx


----------



## Rose24689

Hi Everyone! Crohn'smom, i was just wondering what qualified JJ to be elidgible for hormone injections. I myself am very short and 13.5 years old and have been tested for many things to see why i have not grown in any way at all for 3 years. My endocronoligist said growth hormone therepy can have a lot of terrible side effects, but maybe JJ is taking some other thing then she's talking about? Anyway, they havent suggested i take any kind of hormones and i dont know why. Im not growing, going through puberty, or anything and they tested my puberty hormones and said they were very low. What do you think?


----------



## Suzysu

Hi Rose - I'm sorry you are going through hard times and I hope that your Dr can come up with something that will help you soon - If not can you get a second opinion somewhere? there is still time that things will start to happen soon as you are 13.5 and at least you are being monitored ie you are 'in the system'.
I hope you get some answers and some help soon xx


----------



## Suzysu

So we have had a stressful Christmas and New Year! Freddy has been sick since a couple of days before Christmas (really nasty cough and cold). At the moment he has a fever (since sunday) that I can't get to go below 38.6 (even after paracetamol). He passed a load of bright yellow mucus yesterday afternoon (like beaten eggs) and nothing since (very unusual for him), His knees are sore again and keep giving way. He seems to be having a lot of tummy pain especially after eating (but seems to want to eat which is weird). He looks pale and apart from a short period (40mins or so) when he played with the others, he has either been asleep or sitting on my or my hubby's knee feeling very sorry for himself. Poor thing it just goes on and on.


----------



## Farmwife

Poor Freddy! Love and hugs to you both.
Keep searching. It's hard but when you get the answers, what ever they may be it will be worth it!


----------



## Catherine

Were you seeing bile, it usually a bright yellow or sometimes green.  When there is nothing left to throw you begin to bring up bile.  Giving small amounts of water can help.


----------



## DustyKat

I hope Freddy is soon feeling on top of things Suzysu. Poor little lad has enough going on, bless him. :hug: 

Dusty. :heart:


----------



## Suzysu

Thanks everyone!
He had a load of dried bright green stuff on his sheets this morning, may have been bile but could have been from his ear as this also burst this morning although it was straw coloured creamy stuff with no green so who knows. His diarrhoea is disgusting tonnes of mucus and smells like something died! The Dr felt his tummy and said the pain he was having def wasn't appendicitis as he let the Dr touch his tummy, could be urinary although this is unlikely as he is a boy. Basically he said we had to treat what we can see ie the ear - but to keep a close eye on him and bring him back if things didn't improve. Poor thing he is so miserable and isn't really eating - he just needs a break and a chance to recover from everything.


----------



## Crohn's Mom

Oh Suzy I sure hope something gives soon for the lil guy - he definitely deserves a break! :hug:


----------



## upsetmom

Your poor little boy......he has been through so much.

He sure does deserve a break...... ..:ghug:


----------



## my little penguin

Hugs so frustrating 
Hope they can get him better soon


----------



## DustyKat

Oh my goodness Suzysu...how heartbreaking for you and how unfair for him...:ghug:

In my thoughts. :heart:
Dusty. xxx


----------



## Catherine

UTI are uncommon in young girls and even more uncommon in young boys they sometime refer to as a honeymoon disease.

There is condition called renal reflux.  This is condition where due to a problem angle of the tube from the kidney to the bladder the urine is able to back flow which can cause kidney infections.  It occurs in both boys and  girls usually dx under the age of four.

My middle daughter was dx with renal reflux aged 2 and half.  She presented with fever, vomiting of bile and what appeared to stomach pain.  She had a kidney infection at dx.  This one infection has resulted in scarring to her kidney.

It is a very simple test for UTI, I would ask your doctor to rule out.


----------



## Crohn's Mom

sorry it's so big ! How can I resize ?? Or someone ??

This is the 4th episode (or 5th?) in the last year that JJ get's these "sores" in his mouth.  Can it just be a "cold sore" ? do you think? 
Or should I still be thinking it's "ulcers" ? argghhh....


----------



## Crohn's Mom

Well we went to the follow up GI appointment this morning and JJ still has the ulcers in his mouth , so he is definitely getting the pill cam done ! 
Waiting on the appointment as we speak  
Oh and he has lost 5 pounds in the last 4 weeks since he was here ... :/


----------



## Suzysu

Sounds like the pill cam is definatly needed - I hope they can do it soon before he looses too much more weight - did they suggest supplementing with shakes or anything? sending lots of hugs xxxx


----------



## Farmwife

Pill cam time!:heart:  We're you able to get some of that magic mouth wash from the doc? My son got it and it is magic!

Hugs to you and yours!:kiss:


----------



## my little penguin

Hugs ...
Not what you needed now but at least you know the drill.
Hope the pill cam gets you some answers soon.


----------



## DustyKat

They are definitely apthous ulcers T. 

It is good to hear that they are pursuing this hun but I hate that they feel the need to do so.  

Sending my love and well wishes that it all comes to nothing mate. Is it possible that I can be as nervous as you are? YES! 

:goodluck::goodluck::goodluck::goodluck::goodluck::goodluck:

Dusty. :Karl:


----------



## Crohn's Mom

Dusty - please don't think I'm "stupid" ... But apthous ulcers are not just "cold sores" right ? 
I'm sure I'm supposed to know this since I have a daughter with such severe crohns - but I don't :/ 
And, quite frankly I am not afraid to admit my ignorance - but it's only because I think it may benefit someone here :/ 
I know I said before that I was thinking if backing off , but after the follow
Up today I can't. 
However , depending on the results of
The pill cam I could change my mind again...
I only admit this as well in case there is another parent feeling as I am - ...
Are we "searching" for something that just may not be there ? 
It's truly a hard, hard road - especially when you already have a diagnosed child


----------



## DustyKat

Oh T...:hug:...there is nothing stupid about your question...:hug: 

Mouth ulcers, as we call them, and canker sores, as you guys do, are different to cold sores. They both often occur when you are "run down" but again they are two different things. 

I know exactly how you are feeling T, that was me in November 2010.  God I hope more than anything that JJ doesn't follow Gab down this path. I feel so acutely your fear and uncertainty. I don't know if you have ever seen this old thread of mine T, I want you to see it only for the fact that you will know that what you are feeling is normal and natural and you are not alone...

http://www.crohnsforum.com/showthread.php?t=14192

I don't want to say this T, and I don't want to not say anything either. It is in no way a reflection on what JJ is experiencing but one of Matt's earliest symptoms when I looked back on things was mouth ulcers. I treated them at the time with B Complex and they went away and I never gave them another thought until he was diagnosed. They were present earlier in the year he was diagnosed. 

Dusty. xxx


----------



## Dexky

Crohn's Mom said:


> I only admit this as well in case there is another parent feeling as I am - ...
> Are we "searching" for something that just may not be there ?
> It's truly a hard, hard road - especially when you already have a diagnosed child


I hope you are searching for something that isn't there, but you know(more than most) that the outcome can be so much improved if it is and you find it early.  Thoughts and prayers T!


----------



## Crohn's Mom

Wow Dusty ! 
No, I have never read that one ( I guess I didn't stalk you very well ! LOL)
I think the first of Matt's story I had previously read from was Dex's "update on Dusty's Matt" thread.
So, thank you for sharing that with me ! 
It does make me feel a bit better about my roller coaster of emotions concerning whether or not to proceed with testing for JJ. :hug:


----------



## Farmwife

DustyKat said:


> Oh T...:hug:...there is nothing stupid about your question...:hug:
> 
> Mouth ulcers, as we call them, and canker sores, as you guys do, are different to cold sores. They both often occur when you are "run down" but again they are two different things.
> 
> I know exactly how you are feeling T, that was me in November 2010.  God I hope more than anything that JJ doesn't follow Gab down this path. I feel so acutely your fear and uncertainty. I don't know if you have ever seen this old thread of mine T, I want you to see it only for the fact that you will know that what you are feeling is normal and natural and you are not alone...
> 
> http://www.crohnsforum.com/showthread.php?t=14192
> 
> I don't want to say this T, and I don't want to not say anything either. It is in no way a reflection on what JJ is experiencing but one of Matt's earliest symptoms when I looked back on things was mouth ulcers. I treated them at the time with B Complex and they went away and I never gave them another thought until he was diagnosed. They were present earlier in the year he was diagnosed.
> 
> Dusty. xxx


DustyKat
Well where's the rest of the thread of that link????? I have to find out if you son did get Crohn's?:shifty-t: (I know he did but remember my life is simple and I want to know how you found out? Very suspenseful so far.):rosette2:


----------



## Crohn's Mom

Update on Dusty's Matt

Here it is...happy reading !


----------



## Farmwife

Thanks. I'll pop some popcorn and get all cozy and read about Dusty's life. Feel safe Dusty?:ylol:


----------



## DustyKat

I feel very safe. :biggrin: It is you I feel very sorry for. :lol: 

Happy reading! 

Dusty. xxx


----------



## Farmwife

DustyKat said:


> I feel very safe. :biggrin: It is you I feel very sorry for. :lol:
> 
> Happy reading!
> 
> Dusty. xxx


 
Dusty,

I would think that was funny, if it wasn't so stinking true!


:rof::hug::rof:


----------



## AZMOM

T......... Yes, that's an aphthous ulcer. No not a cold sore. Yes I know you already know that now. Sigh.......

Staying tuned for a pillcam post.....

((((Hugs))))

J.


----------



## Crohn's Mom

Thanks J - much love !


----------



## Crohn's Mom

By the way - I bought JJ some Boost drinks over the weekend and asked him to drink them for breakfast.  They are vanilla flavored (he is a VERY picky child) he leaves for school at 5:55 a.m. So hasn't been eating breakfast this school year much (or lunch - claims he's not hungry) anyhow - today was the first day and he liked them!  mommas happy, and it's easy and nutritious for him to take with him on his way to the bus  
Hopefully they will help him even just get a little nutrition and stop losing weight


----------



## my little penguin

Woohoo for boost
CAn you send one with a cold pack for lunch 
So if he doesn't eat at least it's something????
We did this in the beginning with DS prior to dx


----------



## AZMOM

And I'm still doing it with my EoE skinny kid!


----------



## Crohn's Mom

That's a great idea mlp - 
Being so short he may be concerned with taking them to highschool for lunch for fear of being made fun of - but, I will definitely see how he feels about it


----------



## AZMOM

He should tell anyone who asks that he's "bulking up" . That's what Hunter told his friends.


----------



## my little penguin

Insulated water bottle with the frozen insert then its just a "protein" muscle shake kwim.


----------



## Crohn's Mom

You ladies are too smart!  
I could buy him the Muscle Milk drinks for school ! They would all be jealous then


----------



## Suzysu

He leave's for school - LEAVES at 5.55AM?:eek2:
No way!!!! - you americans are hard core!!!!

I hope the shakes keep him from loosing too much more weight before the pillcam. xxxx


----------



## Farmwife

Crohn's Mom said:


> By the way - I bought JJ some Boost drinks over the weekend and asked him to drink them for breakfast.  They are vanilla flavored (he is a VERY picky child) _*he leaves for school at 5:55 a.m.*_ So hasn't been eating breakfast this school year much (or lunch - claims he's not hungry) anyhow - today was the first day and he liked them!  mommas happy, and it's easy and nutritious for him to take with him on his way to the bus
> Hopefully they will help him even just get a little nutrition and stop losing weight


crohnsmom,
:ywow: Tell your son that their's a farm family in Michigan that thinks that's early too. Does a teen-age boy's brain even work that early? My hubby sympathizes.:wink:


----------



## Catherine

Crohn's Mom 

Your could be a swimming mum, we leave home at 4.30am for swimming training before school.:dance:

Farmwife, whats your husband up to a farmer should be up with the sun.

My father didn't believe farmers should get up that early either,  cows can't tell what time it is


----------



## my little penguin

4:30 training  eek:
 I thought 7:30 pool time was rough on Sat.

FWIW high school here loads the bus early around 6:30 or so...


----------



## BoyMama2000

My son loves boost.  I the tried equate (walmart brand) and he liked them even better.  They are less expensive so I was thrilled.  You can get boost plus or equate plus and it adds some extra calories and protein as well.  If he is willing, we gave him one right before bed when he wasn't able to gain weight.  Our nutritionist recommended that.  Sometimes we would add a breakfast essential to the vanilla boost in a blender.  He likes that too.  Glad you found a way to get those extra calories in.  Boost in his lunch is a great idea.  If he doesn't want the bottle, you can put it in a drink container and he can say it is a shake.


----------



## Suzysu

LEAVE HOME AT 4.30 OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
that is what you call total dedication!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
respect to the pair of you!!!! xxxx


----------



## Crohn's Mom

OH MY GOSH ! 
maybe I am just "wishing" here....however, I am a person who looks for any little positive sign and runs with it 

JJ just came in my room and asked if he takes a pack of Poptarts with him for breakfast in the morning, then does he still have to drink a Boost for breakfast ?
I said, I don't care if you take a hamburger with you to to the bus stop for breakfast and eat it, as long as you drink a Boost for breakfast first! 
We went back and forth a few times while he was trying to negotiate..lol...but now he understands what I mean.

And then, he says,....by the way mom....look at my finger and toe nails.
I did, and holy crap ola ! 
This kids nails have been extremely malnourished for YEARS ! And now, he has "almost" nails after just a week of Ensure ? 
Momma is happy, and hopeful, and informed him that his breakfast of Ensure is not just about "breakfast' but about nutrition 
I said go ahead and eat your Poptarts, as long as its after the Ensure 
He agrees and is noticing "things" himself and seems excited !


----------



## Crohn's Mom

UMMMM>...sorry...I kept typing Ensure, and he is drinking Boost 

Goofy me ! LOL


----------



## my little penguin

Glad it is working
 Know it made a big difference for ds


----------



## Suzysu

YAY!!!! glad its helping him xxxx


----------



## Farmwife

I too got  excited when Grace's finger nails started to grow straight. I hope you get answers soon!

How's Gabs?


----------



## DustyKat

Woohoo! That is so fab T! :allright::allright::allright:

I love that you are getting some rays of sunshine in your life! :sun::sun::sun: 

:mademyday: 

Dusty. :heart:


----------



## Dexky

That's awesome T!


----------



## Suzysu

Anyone have experience with lactose intolerence?
Freddys been ok (not ok like a normal kid but ok for him) for a good month or so.
Last week he kept saying his knees hurt again but didnt seem too upset,  he had one night crying, dribbling, retching etc but then was fine.
On Dr's orders I am slowly re-introducing Dairy - so saturday he had one flapjack (had butter in it), Sunday he had another, plus a little cake (with butter and a very small amount of milk in it) everything else has been 100% dairy free until today when my daughter happily gave him the remains of her hot chocolate to finish off (resulting in pain, wanting lots and lots of cuddles, followed fairy quickly by mucosy diarrhoea). Apart from today he has slowly been becoming more clingy, tummy pain, and worsening stinky diarrhoea since saturday.
Freddy has always been very up and down so I dont know if all this is to do with restarting dairy or just his normal fluctuations - my question is if he was still lactose intolerent would one flapjack per day cause all these problems?? so quickly??


----------



## Mylittlesunshine

Suzysu I know if Lucy has something 
With milk in it by mistake as she is diary
Free I know the reaction is very quick 
And effects her for a few days after.
Hope freddy feels better x hugs x


----------



## Tesscorm

Crohns mom - great news!!!! :banana:

Suzysu - sorry, not sure re flapjacks but have heard/read that milk/lactose can cause problems fairly quickly to those intolerant???  However, I would 'guess' the hot chocolate played a bigger part than the flapjacks.  But, I wish Freddy was feeling better more often and consistently! :ghug:


----------



## Jmrogers4

Suzysu, myself and my younger son are lactose intolerant and we both could eat a flapjack (pancake) or a small piece of cake with little to no problem (maybe something to do with cooking/chemical reaction) but if you gave us a hot cocoa made with milk we would be in the bathroom within 20 minutes with D


----------



## Suzysu

Thanks everyone!
JM - The reaction to the hot chocolate was certainly impressive and like you say D+ within 20mins - I just was amazed it would be so quick.
MLS - Would Lucy react to something cooked with dairy in it like cake or something? 
So the question now is do I continue with gradually increasing dairy? - I guess it would make it more certain that it was a problem - It's just not nice for him.


----------



## Mylittlesunshine

Suzysu Lucy reacts to all milk products cooked
Or not cooked . It's the same reaction. 
It isn't nice for them as it gives pain 
And cramping ect . 
How much hot chocolate did he drink? 
It could of been a mixture of everything 
And his body reacted slowly. 
I know a boy in Lucy's nursery and he has 
Milk intolerance and his mum said he reacts 
6 hours after he has had milk products . 
Maybe talk to his doctor before you carryon.


----------



## Farmwife

Mylittlesunshine said:


> I know a boy in Lucy's nursery and he has
> Milk intolerance and his mum said he reacts
> 6 hours after he has had milk products .
> Maybe talk to his doctor before you carryon.




Same thing with my son and I. About 6-8 hrs later we throw up if we've had to much milk. Now we do have a tolerance for it but to much and up it comes.:ack:
Ironically Grace doesn't seem to be bothered by it.:heart:


----------



## CarolinAlaska

Farmwife said:


> Same thing with my son and I. About 6-8 hrs later we throw up if we've had to much milk. Now we do have a tolerance for it but to much and up it comes.:ack:
> Ironically Grace doesn't seem to be bothered by it.:heart:


Praise God for the little things!


----------



## Suzysu

I appologise in advance for the venting that is to follow!
Had a bad night\ early morning with freddy, and along with the recent downward trend thought I should take Freddy to the GP to ask advice on the whole re-introducing dairy thing and thought I would get the Dr to check Freddy's knees as well.
We saw a new GP today.
Advice re the dairy is to stop and see what happens - sounds sensible.
explained briefly about Freddy's problems and about his recent issues - explained about his knees and asked advice - Dr didnt even examine or so much as look at him (he sat on my knee cuddling into me the whole appointment looking poorly while my 4 year old did the normal healthy child thing) the Dr said and I quote 'I am only a GP - this is testing my knowledge to the limit' (along with associated dramatic hand gestures) - SERIOUSLY a child with sore knees test's a GP knowledge to the limit? all I wanted to know was weather it could have been something as simple as growing pains or weather I needed to take it more seriously - I would have thought he could have at least looked at him.
When we got home my 4 year old said he was hungry so I got them both a little cake (dairy free for Freddy of course!!) I held the cake out to Freddy he looked at it and burst into tears - I nearly did the same! - I think I am just tired!!
Thanks as always for reading my ramblings!!


----------



## Mylittlesunshine

Hi Suzysu
So sorry you had bad night with freddy
Can't believe the gp, well actually nothing 
Surprises me after experiences with doctors.
How is freddy doing today.


----------



## Farmwife

Suzysu

Grace has had knee pains for...years. Since one she would point and say boo boo.
Her pain hits just in the joint and they is NO swelling and NO redness. When it hits her, it's very painfully and can last minutes to many hours. Now she needs meds to make it better.

Does any of that sound familiar?


----------



## dannysmom

Hi Susy - My older kids are lactose intolerant and even just one pancake will both my som. We've had doctors tell us that treating Danny will require "somebody much smarter" than them. I appreciated their honesty. We've also been told "he is a difficult case". It is all so heart-wrenching as a parent. I am glad the re-introducing dairy has been stopped. I hope you get some answers soon.


----------



## Suzysu

FW - all to familiar - He's started to limp occasionally and his legs give way sometimes.
He has now developed a rash at the top of his neck - another thing to add to the list!!
Danny's mom - I don't mind if a Dr doesn't know something or Freddy needs to see an expert it was more that this guy didn't even examine him - he basically just couldn't be bothered - that made me cross!
Freddy has had paracetamol and is happy (although still not eating) so long as he is attached to me limpet style! - so no housework for me this afternoon (shame!)


----------



## Farmwife

What does the rash look like Suzysu? Grace has gotten a rash on the back of her neck before.


----------



## CarolinAlaska

Suzysu, I'm so sorry your little man is so miserable.  I wish the GP could have offered to try something!  I'm glad you are stopping the lactose.  That makes a lot of sense.  Big hugs to you both!


----------



## Momto2girls

Hey everyone -- listen, I have been going back and forth on whether or not to do this MRE for Gracie on March 1. I am very very conservative on tests -- and doctor I know said something that stuck with me recently. We were talking about my brother (who was diagnosed with Crohn's at age 19) and I was saying that he had all of these early signs -- that my parents (or probably the doctors!) knew were signs of IBD -- like these really bad sore cracks in the corners of his mouth, and his impactions and stomach pain that no one really ever took seriously. And had they found it earlier, would that have been better? And she said it was so hard to diagnose Crohn's that my parents just probably saved him years of unneccessary testing.

So I'm really torn. I hate for her to suffer needlessly for years. And I hate for her to be poked and tested and scoped constantly until something definitive shows up?

Her tummy pain is A LOT better on sulfasalazine. Her bowels still aren't normal. She has a lot of headaches, and she is throwing up in her mouth a little bit from time to time? She IS better though. 

Don't you think I should hold off until she's having really concerning symptoms??


----------



## Farmwife

Welcome to my last thought right before the GI called with the results.
 With my Grace her symptoms over time are getting worse. So maybe they weren't full time but still there. My hubby said the perfect thing when the nurse asked about Grace. He said to her the GI is trying to slow the Mac truck before it hits. A hard analogy but accurate none the less. So to answer your question...it's up to you and what your gut tells you.


----------



## Crohn's Mom

I understand your dilemma - just read a few post back and you'll see!  
However, with the symptoms your child is having , I would think further testing is warranted. And as far as "invasive",
IMO the pill cam seems to be one of the least offensive - with the worst part being trying to swallow the pill capsule. 

It's completely up to you of course and how you feel 

I was very close to deciding not to pursue testing for JJ, but his constant belly aches and fatigue are enough to tell me to just breath, and let him do the pill cam and depending on those results I will decide after that whether to wait and see or pursue more.

Big hugs - I know how hard these decisions are !


----------



## Momto2girls

Thanks so much. I knew you al. Would be able to relate!


----------



## my little penguin

:ghug:
It's hard to decide.
But here's another story for you. 
16 year old who finally was sick enough to go to through all the tests.
Gi recommends a colostomy because the disease is so far advanced.


We didn't  do all the tests for ds right away.
We even held off on the upper and lower scope :ack::runaway:
We didn't know what he had
And all the ped thought he was normal so .... Obviously we should be that type of parent and push for more tests .

One thing I learned through all this....
The Gi is not going to perform a test unless they have a good reason for it no matter what you think . They have to be able to justify the need for that test to insurance companies etc....
Which even when you have a valid reason they still don't want to approve.


----------



## Crohn's Mom

Thanks MLP ! 
You just made me realize that maybe our GI isn't just being "nice" when it comes to scheduling the Pill Cam on JJ just because of his sister history of CD, and moms history of being a bit overly neurotic!  
Makes me feel more justified.  
Now if they would only get their machine fixed we could actually get it done lol. - insurance finally approved and then their machine broke -
Go figure lol


----------



## my little penguin

Fingers crossed their machine gets fixed soon.

Our insurance will not cover a pill cam if you have a dx of bid 
Only if you have NOT
Been dx yet:ymad::ymad:
So if we want ds to have one this year then we have to pay for it


----------



## Maree.

Have they tested fecal calprotecton?  It's another check they can run that's totally non invasive, as its a stool test.  That might give you a little more information on what's going on.

When Liam started complaining of stomach pains, because there was family history of Crohn's his GP tested fecal calprotectin to check whether he should be referred to a GI, for more invasive tests.  

His result was high (over 600) so he has had a Barium Follow Through X-Ray, and colonoscopy and biopsies to look for signs of Chon's.  Still waiting on Biopsy results and a 2nd calprotectin test result before deciding on next steps.


----------



## Momto2girls

Thanks again everyone!! I am so sorry, MLP, stories like that are SO scary!! I DON'T want that to happen...I don't want to drag her through a childhood filled with unneeded tests. 

But, I hear ya -- the doc wouldn't order anything that wasn't justified. I still do not get a good feel though if we have to put her under if we wouldn't just be better off re-scoping?

So she says everytime she moves her eyes to look down she gets a headache. I think this is what is causing the headaches in the car -- b/c she has to look down in order to buckle her seatbelt. I don't even know what to think anymore?

Today she was burping a bunch. I don't recall her ever burping before? That with the spit up in the mouth I wonder reflux? And the asthma symptoms?

Hmmm...decision, decisions!

Maree -- they did lactoferrin which I understand is similar to fecal calprotectin -- and it was normal. So yet another reason to maybe not test?? Of course that was when? I month or more ago? I'd have to look.


----------



## Suzysu

I think the MRE can see the bits of intestine that the scopes can't reach - if disease is centred there then re-scoping may not shed any more light on things? I think given Gracies history and your family history maybe having the MRE may be a good idea even if it is normal you know a little better where things stand xxxx


----------



## Momto2girls

Yes, that's true. I also got to thinking you know a year ago they found inflammation but no answers so here we are almost a year later and maybe it should be followed up on ... Ya know? Also does anyone know if symptoms are different if it is higher up?


----------



## Crohn's Mom

I have no idea honestly (you'd think I would) if symptoms are different higher up - 
However, I do relate to having scopes a year ago and there being inflammation (in jjs case chronic inflammation - nonspecific ) and nothing being done but watching :/ 

Ugh - why can't this just be easier ??

I am trying to take tomorrow off of work to take JJ to docs because of severe lower back and right lower abdo pain


----------



## Maree.

I suspect waiting and watching might be the approach for us too and I'm ok with that.  However I want to try to agree some clear parameters around followup/further testing triggers upfront because otherwise I think I'll feel very anxious about that process (I'm a project manger by training, I need an agreed plan or I'm out of my comfort zone.)

I definitely want agreement on list of specific things we're monitoring and what grounds would have us move to the next sets of checks up front.

I also feel like if a test shows a concerning result, eg inflamation and your in monitoring mode it makes sense to have some sort of agreement in place as to what frequency they'll rerun those tests to see if there have been changes.   

If your coming up for 12 months since tests that showed inflamation I'd be pushing to have them done again, so at least you can compare the results and make sure that there has been no change or that your tracking in the right direction.


----------



## Momto2girls

Crohn'smom -- sorry about the pain he's having. No fun at all!! I DO so wish this were easy!! They did give Gracie meds at least for her inflammation -- so that's good! But we still don't have a great picture of what is going on. 

Maree -- they want to scope -- I asked for an MRE instead b/c I thought it would be less invasive, but I what I was really hoping for was that she wouldn't need anesthesia, but she does anyway. But either way, they do want to take a look again. But, I am the one hesitating. On one hand if we rescope and everything looks good it would be SUCH a GIFT!!! If we re-scope and it looks the same it would seem SO pointless! And of course if we scope and it is worse, well, then we'll be glad we did, ya know!? I guess the worst-case scenario is pointless...but that's they stuff that makes me feel like I am losing it!


----------



## Maree.

If they scope and it looks the same at least you know that it's not progressing.  If I was in your shoes I think I'd see no change as a fairly positive outcome at least it means that her condition appears to be stable at present and the waiting and watching approach isn't doing her any harm.


----------



## Momto2girls

Yes, that's true! I guess I feel "in limbo" since we've had no diagnoses, so the same would feel more like being in limbo with no real answers. I mean, if what she has IS pre-crohn's/early crohn's/mild crohn's, then I could live with that. And while most people seem to think that's probably what it is, no one has really said that officially, ya know? 

I'm going to call GI nurse today and give an update and see what they suggest.


----------



## Maree.

With Liam I'm expecting the same limbo land at this point.   Our GI has been very clear that he has no idea what pre crohn's looks like, so given the family history even totally clear results don't rule it out.

It's good that our kids are being actively monitored, if they never develop crohn's or not until much later in life this monitoring won't have done them any harm.  If their conditiond do transition to full blown Crohn's hopefully the monitoring will mean this is spotted before the inflamation is chronic.  Which hopefully will give them the best possible treatment outcomes.

The other upside for us of limbo land versus a clear diagnosis, is that it will be much easier for us to get health insurance cover as a family, than if we had a child with a Crohn's diagnosis which is important to us as our current health cover is linked to my husbands job.


----------



## Crohn's Mom

Pill cam scheduled for Thursday the 21st ! 

Now were off to the ped GP to see what's up with the kiddos back  
Poor kid is in so much pain this morning. I'm not used to seeing him like this.


----------



## Jmrogers4

Glad you got a date scheduled for pill cam Crohn'm Mom - Good luck!
Hope you get the back pain sorted out as well


----------



## my little penguin

Why not scope/mre same time only one knock out because IF they find anything on the scope or mre then they will want the other test.
We combo procedures alot so there is less exposure.

Woo hoo on the pill cam  T


----------



## Crohn's Mom

All done with doctors - 
I had to fight to get X-rays ordered ugh! 
Docs theory is that his back pain may be caused from the right knee pain jjs had for the last couple months. He said there's some inflammation around his knee, and a possible tear. 
He wanted to just start him in physical therapy and if that didnt help after a couple of months (ugh!) then do an MRI. 
Well, I had to make him understand that I am not comfortable with that plan simply due to the fact that JJ is on hgh injections and the knee and back pain are the main symptoms we were told to look out for. 
So now he is getting full lumbar, hip, a d knee X-rays today. We also have the script for physical therapy. He also prescribed him Toradol for the pain - not sure if I will let him take much of that tho due to it being an NSAID. 
I'm going to put a call into his endo doc as well and make them aware.


----------



## dannysmom

Hi T ... sorry JJ has so much pain. I hope it goes away soon for him. How long has the knee and back pain been?  

And others ... I love the "Limbo land" phrase above.  I feel more comfortable having tests done, that have not been done before, because I'd hate to think we are overlooking something. Last year Danny had many tests done (MRE, scopes, etc.) and they did not yield additional answers ... so we are taking a break from testing as long as he does not get worse.  (It has been maybe 9 months now without testing ... not sure whatis next)


----------



## Momto2girls

So I cancelled the MRE. The thing is, we can always reschedule, right? I mean, as it is our MRE was on March 1 and our appt with the GI on March 13 -- well, I'd really like to see the GI first. Also, we are doing allergy testing next week -- we are seeing the eye doctor for eye pain today and she has her 5 year check up in March as well. So who knows what we might sort out?

Also, she had a huge poop today -- which was encouraging -- even though it was GREEN! Like perfect pea green. What does that mean? Anyway, I think if even ONE lab test can back abnormal I'd feel better with more testing. And we haven't done bloods since Sept. So I am thinking bloodwork with GI or ped on March and go from there? 

Sorry about everyone else out there in limboland! Argh!!


----------



## poppets mum

Beginning to feel like a frequent flyer in a holding pattern in limbo land. Tired of my kid flirting with this disease after being told twice she has Crohn's and then again no she doesn't. Sometimes makes my head hurt.


----------



## Suzysu

We have our next GI appointent in a week so I was just 'reviewing' Freddy's case in my head - last April he had an Iron level of 5 (should be 8) and his PCV was bang on the lower limit of normal, the next blood test in May they didn't test iron levels, PCV was still bang on the lower limit of normal but Ferritin was out - I haven't hassled them for more bloods because I felt he had been through so much, and thought that if he needed them they would suggest it - does anyone know\ think I should get them to check it again?


----------



## Farmwife

I would only because it will give the GI a fuller picture. If you don't what MIGHT happen is the GI will say lets see what his labs look like first before I make up my mind on his.......
Than you will have to wait for the labs to come in and than for the GI to read it.


----------



## CarolinAlaska

Yep, I'd request labs prior.


----------



## dannysmom

I agree with the testing again Suzy. Good luck with your appointment.


----------



## Suzysu

In the UK it's the GI that orders the labs - so he won't have them before the appointment - its just weather I ask him to run some or not if you see what I mean!


----------



## my little penguin

We just call and ask / remind the Gi nurse if they want xyz lab then they call in the order so we can discuss results  at the appt.


----------



## Suzysu

MLP - that sounds much more sensible! Where we are the only place that will take bloods from kids is the hospital that we go to to see the GI - I'm not sure my GP would order bloods for me - its all very complecated and I just try to do what I am told!! - It would make much more sens to have the bloods done first then see the GI! I'm in two minds about having it done anyway - I'm still hoping he will just outgrow what ever it is that is wrong with him!!


----------



## CarolinAlaska

Yes, we all wish our kids would just grow out of it.  I hope you're a lucky one to get her wish...  After 12 years of not knowing why my little girl can't/won't eat, I'm glad to get a diagnosis, even if I see that she won't outgrow it.  I have hope now it can be treated, and even more hope that God will heal her some day...


----------



## KatieB

Hi everyone, 
I'm brand new here. My 7 year old Noah has a long history of stomach issues, starting with chronic diarrhea when he was an infant - originally diagnosed with diarrhea of toddlerhood and reflux. His height and weight have been steadily falling but since his reflux wasn't bothering him much he was followed by an endocrinologist for his size, not growth hormone deficiency, bone age 2.5 years below his real age. His endo said he was a "late bloomer". Recently, his height plateaued and he lost 5 pounds ( which is a lot for him because now he's down to 39 pounds!) so he went back to the GI after 2 years. His stomach hurts all the time, always has. They called to tell me they found "active focal colitis" but wouldn't tell me more over the phone. They called on Fri. And got him in on Mon. So I should find out tomorrow. I'm a little nervous because everything I'm reading about active focal colitis in children says its a sign of IBD. Now I'm feeling horrible that I let it go this long between GI visits and didn't pay more attention to all his stomach aches. He fell below the 3rd percentile in weight and height a long time ago, but at this point he has completely stopped growing in height and losing weight - he about the size of a small 4 year old, which is not easy for a 7 1/2 year old in second grade! i feel like his endocrinologist also dropped the ball because he keeps saying he is OK even though he weighs and measures him every 3 mo. This just wasn't taking priority for me because he also has a chiari malformation and hydrocephalus with a lot of severe symptoms and may need surgery for that soon, and his twin sister has a brain malformation called cortical dysplasia which causes seizures that can't be controlled with medication and will be getting brain surgery, so I've been overwhelmed with medical issues (between the two, they see 12 specialists!).  Anyway, I'm not sure if he has IBD, but for now I know the GI found the active focal colitis on his last endoscopy/sigmoidoscopy.  Anybody have any first hand info on how this relates to IBD?

Thanks, Katie


----------



## Farmwife

First KatieB Hi and Welcome!

We all have played the blame game. I sometimes wondered if I had pushed more maybe Grace would just have Eos disease and not IBD now. But theirs no need. It is what it is.
Sometimes IBD takes a while to "show up". You could have pushed and nothing would have showed at that time.
As far as your question I know not but we have some wonderful people that might be able to help. They be along when they can. 
HUGS


----------



## KatieB

He got me confused because he has *always* had chronic diarrhea, and then started feeling nauseous all the time, but got diagnosed with the chiari and hydrocephalus, and the increased inter cranial pressure causes his nausea (and terrible headaches, dizziness, crossed eyes etc. etc. ) and meanwhile his twin is always in the hospital and having 30+ seizures a day, so I just lost track of his belly aches...figured the endo would have mentioned if he was more concerned than normal about his growth! It was actually his neurologist that sent him back to the GI for his weight loss and new trouble swallowing (which can be a Neuro symptom of chiari!). Thanks for the support!


----------



## Farmwife

KatieB
Trouble swallowing? Does your boy have allergies? Any to food?


----------



## my little penguin

Hugs
^^^^yeah that trouble swallowing can be a sign of other things Gi / allergy wise.
You have a lot on your plate and you trusted the docs to pick up on things.
The important thing now is he is dx and the Gi should come up with a good plan for him in Monday.
We can help if you have questions .
My son has stomach / Gi issues since he was two weeks old but like you he had other more pressing issues going on .
We even had the ped tell us he was just a skinny kid ( his weight plateau for two years before growth stopped)
Thankfully he is dx now and we have plans in place.
It will be ok
We are here


----------



## KatieB

Yes, he frequently chokes, like with food caught in his throat and turning blue. It's not anaphylaxis and he has no food allergies. The Neuro had the GI look for strictures as a possible cause of his dysphagia, but its not that. She will also do a swallow study, but we now know the cause is neurological not GI related. In chiari, the back of the cerebellum is basically hanging below the skull instead of up in it as it should be. This restricts the flow of spinal fluid and puts pressure on the brain stem, causing a variety of problems. He is being admitted to the Neuro unit for a week for a full work up as soon as they call me with the date. Unfortunately, his GI is from the other children's hospital here in Orlando (one is best for Neuro, the other best for GI) so they can't just do *all* the tests he needs at once! He's already going to be put under anesthesia at least twice during that stay, and was under sedation for his endoscopy/sigmoidoscopy last week. I wish they could just do all his tests at once!


----------



## my little penguin

Did they have the biopsies read for EOS ?
Here is a link :
http://apfed.org/drupal/drupal/index.php


----------



## CarolinAlaska

Katie, I'm sorry to hear about your son.  Your GI symptoms sound similar to my daughter's and we had an early initial workup for chronic diarrhea and failure to thrive early on with her too.  I waited 12 years before I pushed again, so you're doing much better than I did - so keep your chin up.  I started with endocrinology who did her endocrinology workup which was normal, but she did not push for gastroenterology until I made a case saying that I thought her stomach must be genetically small or something because she gets full quickly and has no appetite.  That said to say that endocrinologists have their own narrow glasses on sometimes.  She started asking about other symptoms then and made the GI referral.  She started with only one small area on her transverse colon that showed up with inflammation, but it was a sign to the GI that more than likely there was a lot more in her small bowel since she had delayed puberty.  Further testing proved that.  I hope you can get good solid answers or at least get headed in the right direction tomorrow.  <<<<Hugs>>>>  Sorry to hear that one more thing medically abnormal is happening with your dear children.


----------



## KatieB

My Little Penguin, I have no idea! This was his 3rd or 4th endoscopy/sigmoidoscopy. She stimulated his pancreas this time and took samples from that. Before, his GI thought he has cystic fibrosis and did sweat tests, and the first came out borderline positive, which about gave us heart attacks. The second came out normal. His blood work has always been off, but not crazy off. I assumed she was looking for more scarring in his esophagus or strictures - his past tests have shown scarring consistent with bad reflux. The nurse called and told me his esophagus looked good, noe strictures, no more scarring, but the Dr. wanted to see me that day. His twin Abby hadn't been discharged from FL Hospital yet, so I couldn't get him across town to Arnold Palmer Hospital on Fri. I don't know everything they did biopsies for, but when I google active focal colitis, which the nurse said they found, it says the causes can be colitis caused by infection (possible I guess, but its not as if he's more sick than he always is) ischemia (lack of blood flow usually found in old people) or Crohn's and that it especially correlates to Crohns in children. The nurse said I have to come in to discuss "his treatment options and plan" so I know there is something more involved going on. I've learned the only time I don't get details even when I'm pushy is when a Dr. has bad news and wants to give it in person!  I'm going to assume he needs more tests though, since the GI hasn't done blood work in two years. Should I ask for testing for EOS? ( not sure what that is... Going to google it now!). Tha is everyone!


----------



## my little penguin

Disease would be EOE - eosinophilic esophagitis 
http://www.orlandohealthdocs.com/kidsdigestion/eosinophilic-esophagitis-nutrition/
The Gi would have had the pathologist read the results for eosinophils ( EOS)

You can however have crohn's in the esophagus as well .


----------



## CarolinAlaska

Katie, don't go looking for worse case scenarios.  EOS is rare and will show up on biopsies, I believe.  You'll have some answers on Monday.  Rest today and try not to worry because tomorrow will hold plenty of its own stuff to deal with and you don't have the grace today to deal with the problems of tomorrow, but you'll have the grace tomorrow to deal with it when you have to.


----------



## Suzysu

KatieB - it sounds like you have had such a rough tie with your little ones - Good Luck on Monday - even if it is not what you would like to hear at least you will have a plan in place - and maybe some long awaited answers - sending you many hugs xxxx


----------



## DanceMom

KatieB said:


> Yes, he frequently chokes, like with food caught in his throat and turning blue. It's not anaphylaxis and he has no food allergies. The Neuro had the GI look for strictures as a possible cause of his dysphagia, but its not that. She will also do a swallow study, but we now know the cause is neurological not GI related. In chiari, the back of the cerebellum is basically hanging below the skull instead of up in it as it should be. This restricts the flow of spinal fluid and puts pressure on the brain stem, causing a variety of problems. He is being admitted to the Neuro unit for a week for a full work up as soon as they call me with the date. Unfortunately, his GI is from the other children's hospital here in Orlando (one is best for Neuro, the other best for GI) so they can't just do *all* the tests he needs at once! He's already going to be put under anesthesia at least twice during that stay, and was under sedation for his endoscopy/sigmoidoscopy last week. I wish they could just do all his tests at once!


What hospital do you use for GI?  We are now at Nemours and have never been happier.


----------



## KatieB

He is with Dr. Safder at Arnold Palmer but I was researching Nemours for if he gets diagnosed. AP is ranked higher, but his Endo is at Nemours, the twins' geneticist, and Infectious Disease Dr.s are also there. They go to FL Hospital For Children for Neuro, since they are the better level 4 Epilepsy Center.  Who do you see at Nemours for GI? I also love their online records system, not that I would make a decision based on that lol.


----------



## DanceMom

We see Dr. Franciosi at Nemours.  I was never offered the online records through the GI department but do use it through the Pulmonology clinic.  Not all providers use it and I haven't asked if GI does.  Franciosi specializes in IBD which is why I chose him for our 2nd opinion.  He's fantastic.


----------



## my little penguin

Francosi also specializes in egids 
He ran a EoE clinic at cchmc ( Cincy ) I believe .


----------



## dannysmom

Welcome Katie. Your childrens' health issues are certainly overwhelming! I cannot even begin to imagine. (I have a friend whose daughter has Chiari and related issues. When Danny first became ill with GI symptoms, my older son had a chronic CSF leak so I paid very little attention to Danny's symptoms for months.) I do hope you can get a quick answer and effective treatment for your son's GI issues. I am glad we have the HUG button ... I cannot press it enough for you!


----------



## nurseminnie

New here.

We are trying to figure out what is wrong with our 10 yo daughter.  She has been ill since Thanksgiving.

She had bronchitis and was on atb's and steroids.  She also has asthma.  While on atb's, she developed knife-like stomach pains.  We figured it was the atb;s and she would be better once she was off them.  Had her back to her ped a few times.  They decided it was gastritis from the atb's.  TOld us to see a GI. Meanwhile, the pain changed to a twisting-squeezing pain in her LUQ combined with cramping.  It hurts more after she eats.  Had a CT scan in the ER that showed nothing.

Got in to see the GI the beginning of January.  Bloodwork showed celiac disease and intolerance to dairy proteins and soy proteins.  Had an endoscopy towards the end of January to confirm dx. 

Problem is, the pain is still there.  She has also been running low-grade temps since December and is having non-stop headaches as well as the non-stop LUQ pain which she says is a 9 on a painscale of 10.  We tried a 5 day course of prednisone 30 mg which did nothing to help the pain.  She also started complaining a couple weeks ago that her knees are hurting.  Nothing helps the headaches or the knees.  The only things that help the LUQ pain are chamomile tea and gas x.

Saw the doc again last week.  She ordered a repeat of all the bloodwork she had in January, plus stool for OB and an abdominal U/S.  Now I am waiting to hear results from those tests.  They talked about doing a colonoscopy, but did the U/S instead at this point.

This sounds like it could be Crohn's to me with the pain the fevers and the joint pain.  I know the most common location for the pain is RLQ, but it can happen anywhere.  This pain is different from the stomach aches the was having with the gluten.

Does this sound like it could be Crohn's to anyone else?

I should mention that she doesn't not have any diarrhea or constipation, but her stools were a yellow-green when I had to get the samples for the OB testing.  She also has never complained about stomach problems in the past.  It is just weird that this would come on so suddenly.


----------



## Niks

Hi nurseminnie..
Repeating coeliacs blood tests after going gluten free could come back negative!! 

THe symptoms for coeliacs and crohn's can be very similar and it's possible to have both!

make sure you are really careful with diet. There's gluten hiding in so any things! My daughter has been diagnosed with coeliacs and we havegot rid of everything from our house that could contain gluten!  Also got new pans, toaster etc. It is really easy to crosscontaminate. Even a crumb can cause problems!

Good luck, really hope she feels better very soon 


:ghug:


----------



## nurseminnie

Doc wants to see if the celiac blood work is going down.  We have been so careful with the diet.
Doc is also looking at CBC, liver profile, kidneys, ESR, amylase and lipase.  All that stuff came back normal before, so we will see.  I was actually surprised the SED rate came back normal the 1st time since she has inflammation with the celiac and has been having fevers.


----------



## my little penguin

Have you seen Rheumo given the fevers and joint pain??
Maybe something other than crohn's .


----------



## nurseminnie

No, knee pain has only been the last couple of weeks.  Fevers have been since December.  Of course, that doesn't address the extreme abdominal pain.


----------



## CarolinAlaska

Nurse Minnie, I think your doctor has made a good start, but I certainly wouldn't rule out Crohn's without a good workup.  Hang in there, it's gonna be a bumpy ride!


----------



## nurseminnie

CarolinAlaska, I was afraid of that.  I called the doctor to ask about the tests last week.  I am not good at waiting.  So, now I have to wait for them to call me back.  We have a good ped GI and I have been told she will keep digging until we get to the bottom of this.  I just hate that my little one is in so much pain all the time.  I will also hate it if she has to be saddled with yet another life-long disease.  Asthma and Celiac is enough.  I really don't want to add Crohn's too.


----------



## dannysmom

Hi nurseminnie & welcome. I hope you get some answers ... and I really hope this is all just some temporary reaction to the antibiotics.  My son's illness really started getting bad after he had bronchitis & antibiotics too (he also has asthma). I am glad they are doing lots of tests. Good luck and keep us posted.


----------



## Farmwife

Hi nurseminnie,:ysmile: my girl has asthma and IBD and eos disease. I know, not what you want to hear.:ack:
I hope you child gets help soon and I so glad you have a GI that wants to help.
Hang in there!
HUGS:heart:


----------



## nurseminnie

Thanks!

All the bloodwork came back normal as well as the ultrasound.  Waiting to hear what the next step is.  Celiac labs are improving.


----------



## nurseminnie

Talked to the doctor.  I asked if it could be Crohn's.  She said we can't rule it out even though her labs are normal.  And, since she has 1 autoimmune disease, she could have another.  We talked about all her symptoms again and everything that has been going on.
So, we are doing another endoscopy and a colonoscopy on Monday.  She wants to check the gastritis to see if it has healed and to check the celiac in her small intestine.  Then she will see what she finds in the colon.
Thanks for listening!


----------



## Suzysu

Has anyones little ones had an abdominal ultrasound? - is it a useful test?
What do they look for? - mucosal thickening as a sign of inflammation?
Would a 2.5 year old be sedated or expected to lie still?
And why didn't I ask all these questions while I was with the consultant????!

Has anyone's little one been on an elimination diet? how useful\ easy\ difficult\ stressful was it?


----------



## my little penguin

Ultrasound is easy -just gel on the tummy 
My kids have had renal ones .
Moving does not mess up the image too much and if he is still for three seconds - image capture then he can move his arms or legs.
We did elimination diets with DS since age 2 .
Much easier when they are younger.
Just be sure to get a supplement drink from doc to make up for any lost nutrition


----------



## Suzysu

thanks MLP!
Just worried he won't stay still enough! - he is not good being messed about!!
When you did the elimination diets did they show up things that other allergy type tests didn't? Freddy has had the RAST blood tests for the basic stuff and also the skin patch tests for a few things - and everything shows up negative, going dairy free has helped but he is still having problems so we are thinking of doing the proper elimination diet to try to find out if it's an intolerance to something else - just all sounds a bit scary - the Dr didn't mention any supplement drink - I think I would feel better if he had something like that - I will ask the GP (although I'm not sure they will know much about it!).
Thanks xx


----------



## CarolinAlaska

Ultrasounds are cool because they lay in a bed and there is a screen where they he and you can see what is going on in his tummy.  He may lay there still just because he is distracted by the TV.  You may want to bring a hand held electronic toy/cell phone or something to distract him if this isn't enough.  Hopefully the tech will be comfortable with kids.


----------



## my little penguin

DS was free of
Corn wheat oats barley rye eggs milk and soy from birth to age 3.
Plus a few other things . If he ate them severe stomach pains - so allergist had us avoid . He was just sensitive - not allergic

When he started having trouble again at age 7 we tried gluten free then corn free 
Then corn gluten oat rye barley soy free 
He was on EEN for 9 weeks so free if everything 
We tried fodmaps 
He was a trouper each time 
But none of them made any difference except when he was a toddler .
He is free of all tree nuts due to a true food allergy .
He has reacted in the past and tests positive via rast .

Hope it helps him.
Supplements are highly recommended when eliminating large food groups in little ones 
If you not avoiding soy there is bright beginning - soy drink


----------



## BoyMama2000

He may squirm a bit during the ultrasound but that will not hurt the testing...it just may take them a little longer.  If you are at a place used to kids, I am sure they have tricks.  I would bring something to distract him if you can.  If you have a portable movie or tv player or a stuffed animal that may help.  You can ask him to make his animal still while he stays still when they need him to!

They can see quite a lot and take some accurate measurements as a baseline for the future too.  Good luck with the test.  It is totally painless!


----------



## DanceMom

We have done elimination diets several times: soy, wheat, dairy, eggs, citrus, nuts, shellfish (the major allergens).  Eliminate all possible allergens for 3 weeks, then reintroduce them one at a time.  We kept a symptom journal but we never found any real answers.  A's symptoms don't seem to correlate with what she eats.  And we never used any supplements during the diet.


----------



## Farmwife

To bad you couldn't get your GI to OK EEN. I know he's not dx yet but 6-8 of pure EN and than re-intro one food group at a time. Yes it would take FOREVER (trust me I'm not trying to think of that yet for Grace, if she's of her feeding tube by 10 I'll be happy)) but it might be easier to figure out. HUGS


----------



## Suzysu

Thanks everyone!
We had family over today and it was impossible to stop the other kids giving Freddy stuff he shouldn't have (with milk in) let alone if he was on a proper elimination diet - I guess it would only be for a few weeks though!
I think the GI was up for booking the scan straight away but I wanted to try the elimination thing first - intolerences or sensitivities to foods (although difficult) have got to be better than anything else being wrong! He kept saying that with Freddy's symptoms if he was 13 then the GI would be re-scoping etc but since he is 2 and his weight is ok he is not sure, and what with Freddy having had so many ear infections over the past few weeks I just wonder if everything has got a bit muddled - at least that's what I am hoping! - I am going to try out a few basic recipies this week to see how easy they are and if Freddy will eat them!!


----------



## my little penguin

You really need to put your foot down and stated he does not eat anything except what you give him per his doc.
That way your not the crazy mom.
Fwiw we had to rescope DS to get a dx .
First scope was clean since had had been on a pred burst ( 5 days) over two months
Prior to the scope.
Good luck


----------



## poppets mum

Amy had lots of ultrasounds at our childrens hospital and they gave her a mini dvd player with a movie of her choice. Worked really well.


----------



## Suzysu

But MLP - I AM the crazy mom!!!!
to be fair it was my daughter that gave him some bread - I hadn't said to her that he couldnt have it - but it is so easy for it to happen! - my mother didn't help (on purpose) by opening a large box of milk chocolates and handing it round - I really did feel like the crazy mom following him round making sure he didn't accidently get his hands on any!
Poppet's mum - If they had Mr Bean we would be laughing (literally!!) he loves it!! - and on a totally unrelated issue - I spent a short time in and around Calgary and up the Rockies - one of the most amazing places in the world!! - lucky you living there!!!! xx


----------



## my little penguin

Suzysu
Welcome to my world except if someone accidentally gave DS something - it could be fatal.
So I get the insane mom thing way too much.
Hope the intolerance thing gets figured out for you .


----------



## Suzysu

MLP - That's a scary thing to live with ((Hugs)) xxxx


----------



## my little penguin

Suzysu
It s ok just like a car ride - there are things we put into place for DS to keep him safe. After five years - they are second nature - 
Just saying it is very doable and with a little practice things become normal.


----------



## Momto2girls

Hi! Just thought I'd pop in with an update. I am sorry it has taken me so long. I think I about lost my mind with this whole eyes thing. So we took G to the ped opthamologist that day and they did the whole exam again -- dialated, etc. And the doc said NO inflammation and only patchy dryness. WHAAAAAAT!? So I was seriously like SPEECHLESS that this eye doctor was apparently totally wrong. I was relieved so I wanted to just be happy instead of wasting it being mad at the eye doc, so I just has to stop thinking about all of it.

In fact, I stopped the sulfasalazine. I just was like I think I AM losing my mind! And she must BE fine!! But, of course within 3 days she was doubled over herself in pain after eating, and now she's having joint pain again. It has always been mostly her ankles, but now it is sometimes her knee, and today it was her pinky finger. Her finger did look swollen? I don't know. Oh, and her poops are back to flat.

So that's only like a week off meds, so we're going back on. And we see the GI in 2 weeks. So that's the update! Thanks!


----------



## my little penguin

Hugs I know when ds had to drastically wean off 6-mp for a week before we added allopurinol he became a mess.
Good luck at the Gi appt
Does she see a Rheumo ?


----------



## CarolinAlaska

It's really hard on us moms.  I think that point when we look at our child and totally realize that it's true, that our child does have this awful disease, is one of the darkest scariest times ever.  I'm glad you restarted the med.  I wish I could give you a big hug.


----------



## Momto2girls

It is scary to realize, and I guess I just had to rove it to myself one more time. Since I don't yet have medical proof. She doesn't see a rheumo. She's had the ankle pain for a long time but it has been so mild I haven't addressed it. I guess if other joints are becoming involved as well then we'll have to see someone?


----------



## dannysmom

Mom2girls - Danny's joint pain is intermittent and travels to different joints (ankles, knees, fingers, jaw, lower back ...) Even though his eyes bother him a lot ... the eye dr says all look normal. I hope you get some answers and the medicine helps you!


----------



## Crohn's Mom

I can so relate Mom2girls !
I try and convince myself all the time that Jj is "fine" and since the tests keep showing that, then it must be true!  Then he will be doubled over in stomach pain, or limping because his knee hurts so bad ..
It's such a roller coaster to be on ~
I'm happy I have all of you to ride it with me tho !
Hang in there :hug:


----------



## CarolinAlaska

Momto2girls said:


> It is scary to realize, and I guess I just had to rove it to myself one more time. Since I don't yet have medical proof. She doesn't see a rheumo. She's had the ankle pain for a long time but it has been so mild I haven't addressed it. I guess if other joints are becoming involved as well then we'll have to see someone?


I've been wondering the same thing.  Jaedyn isn't hurting now, but has been off and on with an elevated CRP and ESR when she does.  We had a peds rheumo referral before the Crohn's was diagnosed, but didn't get a call from them for 6 month.  By then she was not having joint pains, so I called back and took a raincheck.  I've often wondered if there would have been any benefit from keeping the appt, especially now that she has the Crohn's diagnosis, or whether it would just be chalked up to her Crohn's.  The specialists have to fly up here 3-4 times a year and it's hard to get into them.  I still have to drive 3 hours to see them.  I felt it would be better to give that appt to some kid who needs it more right now.


----------



## my little penguin

My opinion is every child with crohn's should have a Gi, opthamalogist and Rheumo .
Gi handle all of the gut stuff really well.
The extra intestinal manifestations that come more often than not with kids with crohn's are handled very well by Rheumo ( not just joint pain)
Since they have a lot of experience treating those areas.
Joint pain will come and go but rheumos can help with treatment plan even if that us just water therapy etc...


----------



## Momto2girls

Yep I am starting to think it might be time. I'm just beginning to wonder if we aren't just too keen to all of this so that we are noticing it before the doctors can even do anything about it? But we have her GI appt coming up, her 5 yr check up w new ped and we had to resched allergist due to snow. So all of these spots coming up should shed some light on next steps.


----------



## Momto2girls

So this morning the kuds were playing and Gracie came into our room and she had toilet paper wrapped around her ankle. My husband asked her about it and she said her ankle hurt really bad so she put on a cast. Woah! That actually caught me off guard. Hmmmm...


----------



## CarolinAlaska

Aw, poor girl.  I hope it helped.


----------



## Farmwife

Momto2girls,
Grace has done that same thing. I had to keep a ace bandage handy to wrap up her leg. It did help her but be warned that she still need to exercises it to keep the muscles strong. Most of her joint pain has gone on pred but she struggles a bit with it.
I'm glad to hear about the eye thing. Grace also has a Rheumy and a eye specialist.


----------



## Momto2girls

Thanks everyone. Well, Gracie's "cast" was more for looks then functionality, but it sure did get my attention. And she had a potty accident yesterday which is a tell-tale sign for us she is very constipated/impacted b/c she always has bladder spasms when the colon is full/applying pressure to the bladder. And excema getting really bad again. 

I know I shouldn't have taken her off the meds but I am also kind of glad to know what is going on? It is sort of like a fever, if you are always medicating you don't really know what is going on. But I am wondering, if we are going to see the GI on the 13th (next week) do we assume that if she's having symptoms while back on the meds (I know it'll take a few more days for the meds to fully kick in again) that she will NOT need any change in meds, MRE, or even blood work? (I did want to do bloodwork, but will the meds keep anything from showing up?) 

I don't want her to suffer, but I don't want the meds to mask what we need to do next -- does that make sense?


----------



## CarolinAlaska

They often do the tests to see if there is underlying issues that symptoms are not showing anyway.  I don't think that the med will mask anything in a week's time.  But it may show some improvement if it is working...


----------



## dannysmom

Momto2girls said:


> ...
> (I did want to do bloodwork, but will the meds keep anything from showing up?)
> 
> I don't want her to suffer, but I don't want the meds to mask what we need to do next -- does that make sense?


You thoughts are good .. I would recommend talking to your doctor. I've read some patients are told to taper off certain meds prior to tests (ie prednisone prior to colonscopy) ... but usually it seems patients stay on the medication and the doctors just note what meds they are on.


----------



## my little penguin

Scoping within 6-8 weeks of pred will give a false negative. 
Trust me btdt within DS
Cchmc will not do a scope unless the child has been off pred for  at least 7 weeks to dx .
That is any pred.


----------



## Momto2girls

OK, well, she had a HUGE bm today -- it had black bits in it. I was like a huge mound of oatmeal. I've never seen that much! At least it is coming out I guess? I am sorry for the graphic description!!


----------



## CarolinAlaska

Yea for getting that out!  I hope she starts feeling better.


----------



## Momto2girls

So I've been thinking a lot about our upcoming rheumo appt and her increasing joint pain and her recent issue with her eyes (whatever that really is) and I'm wondering if she could really have some sort of juvenile arthritis which is why her intestinal inflammation was non-specific and her GI symptoms seem largely unchanged? Eye issues while common w crohn's seem to be more common with JA. Does anyone seem to think that's possible? Also given no weight loss and constipation not D?

I just don't think her joint pain seems so severe? But she has been lolly gagging in bed in the morning which is unlike her?


----------



## CarolinAlaska

M2G, maybe the rheumy will know.


----------



## Farmwife

That's true M2G,
(I like how CarolinAlaska or should I saw CA, abbreviated you name. Texting is just killing us.:lol2: KWIM)All the problems you just started Grace has BUT JA is a possibility. I know the AZMOM her DD has both. Maybe she can shed some light for you. I do know that I was thinking Grace had both. Her GP gave us Boswellia (Indian Frankincense) for her to take and....WOW, hardly any pains even though she still having major issues. Her GP wanted her to have a very specific kind. So if your interested let me know.


----------



## Maree.

Fascinated by the success with the boswellia our Arab friends swear by boswellia sacra (from Oman/Yemen).  They chew the resin like chewing gum and claim the liquid it releases solves a wide range of digestive problems.  They are also incredibly fussy about which boswellia sap they'll consume.


----------



## dannysmom

Danny's rheumi diagnosed him with juvenile idiopathic arthritis ... but he really thinks it is likely to be from Crohn's.


----------



## Momto2girls

Interesting -- I've never heard of Boswellia. ?? I will have to find out more. : )

Dannysmom -- is he treated separately or in addition to the Crohn's? Or the Crohn's treatment is the Arthritis treatment? I can see how this would get confusing quickly!

FW -- did your Rheumy test Grace for JA?


----------



## Suzysu

momto2girls? what are your little ones eye symptoms? I think Freddy is starting with eye probs but not 100% sure yet!

FW - a GP prescribing a herbal med!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WOW I've got to move to the US!! it would be unheard of here!! I use Boswellia loads in my animal work - it's fab! so glad its helping grace too!! xx


----------



## Momto2girls

Suzysu -- Our eye doc said she had keratitis sicca -- basically dry eye caused from inflammation caused from IBD (of course she's not diagnosed...but if she DID have crohn's then crohn's would cause this type of eye problem). So our GI rushed us to the ped opthamologist who said only patchy dryness. BUT, the opthamologist wrote a very generic report back to the GI that lead the GI doc to think she hadn't at known about what the eye doc said!?!?!?!? Even though I showed her the eye doc's report and asked her why they'd both have differing opinoins?? Sooooo, now the GI doc thinks we probably need a 3rd opinion. ACK! Doctors make me crazy.

So long story, she does have some sort of dry eyes going on and may or may not have inflammation, but something is obviously developing.


----------



## dannysmom

@Mom2girls - Danny did very bad on prednisone ... sysmptoms worsened. This made us very reluctant to try something more aggressive. The rheumi wanted to try Humira (since it is both Crohn's treament and JA treatment)... the GIs would not prescribe Humira themselves without more definitive diagnostic test results, but the GIs were curious if Humira would help. Since Danny has been improving (ever so slowly), we are waiting and seeing ... and not doing any treatment right now.


----------



## Suzysu

Momto2girls - what signs did she show? -Freddy has slightly red eyes, with some greeny discharge (intermittent gets better or goes away for a week or so then gets worse but never bad enough for me to think conjunctivitis) and sometimes seems very light sensative (crys and covers eyes when lying down for nappy change, same when coming out of a shop\ house into daylight, asks to have curtains closed etc).
Danysmom - I really hope your little guy carrys on improving especially after all he has been through xxxx


----------



## Suzysu

Does anyones little one have normal poo but still pain (high pitched screaming, holding onto abdo, bending over) just before passing a motion, complaining of sore bottom when passing motion, and at other times, and high pitched screaming when bottom is wiped at nappy change? I can see no redness, swelling, blood, fissures or anything around his bottom.
I just dont understand why when the vomiting and diarrhoea finally seem to be improving his pain almost seems worse


----------



## Momto2girls

Suzysu -- Gracie's eyes really only bothered her when she was trying to buckle her seatbelt -- so when she was looking out of the corner of the eye -- and when she would close her eyes to go to bed at night. The eye doctor said that it would be most obvious that there was inflammation during those extreme glances so I guess that makes sense.


----------



## Farmwife

Suzysu
Freddy could still have inflammation inside his rectum. Perhaps the other areas are healing but the rectum will take a bit longer. I do know Grace has looked normal but also has had pain passing.


----------



## my little penguin

Same here DS had alot of inflammation in the rectum and sigmoid colon.

Hugs


----------



## my little penguin

Oh and rectal inflammation does not show in blood work at all


----------



## Momto2girls

We had Gracie's 5 year check up today -- it was OK -- I still really like the new ped. She failed her hearing screening? So we go back for a re-test in 5 weeks. She only grew 1.5 inches this year, but the doc thinks it shows she's thriving and isn't worried about it. We talked about the GI visit and about seeing rheumy, which she absolutely thought was necessary at this point. She knows the rheumatologist were seeing and thinks she's for sure the best. It is interesting b/c the rheumy we're going to see just started an amplified pain program for children who maybe go undiagnosed but still have pain -- which is their body percieving a pain as much worse than it is. So maybe that's G? Who knows. 

Other than that, we're OK. Her joint pain seems to be worse than her abdominal pain these days.

OH! I forgot to mention that the ped said we should tell the rheumy about anything Gracie has that might be "unique" medically. So I told her about her large cafe au lait spot (only one spot so never been a medical concern, but still it is quite large), and how she has two fused teeth -- they are baby teeth on the bottom that are fused into one, they came in that way -- as a "double-wide" tooth. She had NEVER seen that before and said it must be quite rare -- she was fascinated by it. She said she doesn't know of any rheumy-type significance but to for sure let the specialist know.

So I was curious if any of your kiddos have that type of thing going on?


----------



## Farmwife

Hi, I looked up the fused tooth. Here's a link.

http://www.ecds.on.ca/ask_dentist/fusion.html

HUGS


----------



## Naturelover

Momto2girls said:


> So I've been thinking a lot about our upcoming rheumo appt and her increasing joint pain and her recent issue with her eyes (whatever that really is) and I'm wondering if she could really have some sort of juvenile arthritis which is why her intestinal inflammation was non-specific and her GI symptoms seem largely unchanged? Eye issues while common w crohn's seem to be more common with JA. Does anyone seem to think that's possible? Also given no weight loss and constipation not D?QUOTE]
> 
> If she has a motility issue or hirsprungs on top of crohn's, she could still have crohn's w/constipation.


----------



## Naturelover

I know I haven't posted an up date on my daughter in a long time. Due to the concussion I suffered in Sept. I still have not set up her motility study. She still has to take 4 Senekot daily to have a bm. The doc was supposed to call me with a date for the motility study but hasn't. I did manage to leave msgs several times, but haven't heard anything back. My daughter doesn't want to have the motility study done until she finishes her college classes and home school co-op classes. That's fine w/me. Between still recovering from the concussion and dealing with my port line infection and now replacement of port, I can't remember to call the doc anyway. Sigh....:yfaint:


----------



## Naturelover

Momto2girls said:


> So I told her about her large cafe au lait spot (only one spot so never been a medical concern, but still it is quite large), and how she has two fused teeth -- they are baby teeth on the bottom that are fused into one, they came in that way -- as a "double-wide" tooth. She had NEVER seen that before and said it must be quite rare -- she was fascinated by it. She said she doesn't know of any rheumy-type significance but to for sure let the specialist know.
> 
> So I was curious if any of your kiddos have that type of thing going on?


Have you considered takeing Gracie to a dentist that specializes in special needs children? The reason I ask is that there are some dental issues that are particular to certain disorders or illness. Sometimes you can get a diagnosis from a dentist or even an orthodontist.

Also, a dentitst could tell you about when in fetal developement that particular part of the teeth are formed. You can then see if it matches some of the developement of the other organs etc..


----------



## Naturelover

Momto2girls said:


> Suzysu -- Gracie's eyes really only bothered her when she was trying to buckle her seatbelt -- so when she was looking out of the corner of the eye -- and when she would close her eyes to go to bed at night. The eye doctor said that it would be most obvious that there was inflammation during those extreme glances so I guess that makes sense.


If she has inflammation in her eyes, bright light can cause pain to the eyes. So can shifting sight from far to near and vice versa. It can also contribute to dry eyes which is also painful and can cause problems with light etc. Even reading text on a very white page can cause eye pain. Seeing a pediatric specialist like at a major hospital would be a good idea. My experience has been that the average opthomologist miss a lot with children. It took taking my son to a majory eye clinic (Wilmar Eye Institute @ Johns Hopkins) to get a correct dx and finally get glasses etc.

I also started seeing the specialist at the same place as my son. It was his pediatric doc that dx my vision issues. I have since been passed onto other docs there who care for the various aspects of my eyes and vision. Currently I see three specialist there for my eyes. If I hadn't taken my son there, I still would have been suffering myself. Sigh...


----------



## Momto2girls

NatureLover -- We did see an opthamologist at our childlren's hosp. and they want to see her every 3 mos now. I haven't been to a special dentist -- her regular dentist said on the x-rays it looked like there were two teeth under there. But, I didn't ask her about what it might mean medically. So I will be curious to see what the rheumatologist thinks.


----------



## dannysmom

Danny has one cafe au lait spot (about 1inch roundish). My nephew has 2 fused bby teeth in the front of his mouth. He is 19 now with perfect teeth.  I think it is a good idea to mention these oddities. Good luck!


----------



## Momto2girls

Dannysmom -- Yes, I think I will make a note to tell them on Thur.


----------



## Momto2girls

So I've heard of sores inside of the mouth, but has anyone ever had a sore on the chin before? I know, I know, it is ridiculous. But I can't help but wonder about everything with her now! :ybatty:

Last week Gracie had a friend over to play -- they were basically watching my older daughter play Wii -- so nothing physical, etc. I came downstairs and gave them a snack -- oreos -- and Gracie's face got kind of messy with cookie crumbs, and I remember thinking her chin looked red but she has food allergies so she's always getting red from something (even though oreos are generally safe for her). We walked her friend home, and at some point that afternoon her chin ended up looking like a little rug burn. Like a scrape, but pretty much perfectly round. It scabbed up by the next day. And the day after that we went swimming and it almost looked like a blister by then -- and it sort of popped and fell off. Now it looks a little bloody and re-scabbing. 

I have asked her (everyone has asked her!) what happened and all she will say is she has no idea! I really don't think she scrapped herself!?! And it is way worse than you could do by just scratching it yourself.

Anyone!? It is so strange!?


----------



## Farmwife

That's a new one. Spider bite?:confused2:
 I think any girls name Grace our overachievers. 
They can't be normal. :yfaint:
No they have the have the "rare" things that make their mommies look nuts.:ybatty:

Can you get her the GP soon? That's not right.


----------



## Clash

Could it be impetigo? C got that on his chin when he was really young and it followed the same pattern, rug burn look, scab, then due to drooling(really young) scab came off and it had this blistery sore look, the cycle repeated til a visit to the ped for some type of cream.


----------



## Momto2girls

Oh goodness, ya think!? Yuck! We were of course at the ped on Friday but didn't even ask b/c I didn't realize how weird it was at the time.

I know FW! I am sure all of the docs in the metro area are ready to commit me!


----------



## Clash

Because C was still at the drooling age I just thought it was a scrape or something that was raw from the drooling. Could be it, google a pic and see if it might fit. Whatever it is I hope it heals quickly!


----------



## my little penguin

DS gets raised "things" ( arms face hands etc)
Not sure if they blister since he scratches and picks etc.. 
We have prescription abx cream to avoid cellulitis 
No one know what or why .....


----------



## Suzysu

What meds has anyone tried when their little one has pain before passing a motion? I have upped Freddy's senna back up to 5mls twice daily, but this hasn't helped, his motions are normal but with lots of mucus and he was sick last night - would buscopan help? anything else??


----------



## Farmwife

Not sure?
Have you tried spraying warm water on the area before hand to help relax the area?
As you know Grace is on Miralax STILL even on EN. She no longer has pains down there but still needs Miralax.


----------



## Suzysu

The pains start about an hour before he goes, and I think the actual passing of the motion is ok it's just the lead up to it. Today he cried non-stop for a whole hour before he pooed, wouldn't or couldn't sit down in the buggy but said his tummy hurt and he wanted to sleep so I put the buggy seat down flat and he laid on it with his bottom in the air crying till he got home, then everything got worse till he pooed even though I gave him paracetamol and a wheat bag for his tummy.
I called the GP to ask if there was anything we could give him or anything else we could do and she was so dismissive and said that there was no medication licenced for a child of his age and there was nouthing he could have until he was 6!!!! - I nearly burst into tears!! - I know he is not in constant pain but surely so be in so much pain so frequently is not right? I should video him or something I suppose but It's not really something I think of until after the pain has passed.
How is Grace? I've been totally useless and not kept upto date with how everyone is getting on. xxxx


----------



## Farmwife

Grace is..well....she's.....fine. :yrolleyes:

Have you changed GP's before?

I'll check back later. :ghug:
Off to find the perfect Easter dress for my niece. 
It will be a all day epic adventure.:yfaint:


----------



## Suzysu

FW - I know very well what 'fine' means! - I hope you are all coping ok - have fun on you epic shopping adventure!! xx


----------



## Momto2girls

I'm so sorry Suzy -- that sounds miserable for him!! And the stool is soft, correct? Does a little vaseline help? Or maybe a warm bath, like FW was saying? I've changed Pediatricians, let's just say, a FEW times.


----------



## Momto2girls

Well, a friend came by yesterday and we were talking about Gracie and she said her little sister had all of the same stuff growing up -- granted, they are like 60 years old now, so that was a long time ago -- but they never could figure out what it was. Until she was in her 20s and diagnosed with Lupus. LUPUS!? Now I'm freaking out about Lupus. Oh lordy...


----------



## Farmwife

Ya, lupus was brought up for Grace. Also brace yourself for MS possibilities. 
I love the guessing don't you.:yfaint:

Why can't people say...oh I knew someone that had those symptoms and she's healthy and hasn't been sick in 30 some years.


----------



## Momto2girls

Dude. Really? Lupus? And I do remember the ms thing for you. Somehow I can read about this stuff all day long. What's wrong with me? And when it gets to be over my head I'm just mad I didn't do to medical school! Ha!


----------



## CarolinAlaska

Suzysu, so sorry your little one is struggling so much with his BMs.  That is so sad!  When my daughter struggled with BMs (not my crohn's dd), it helped to rub her back and tummy.  It also helped when I gave her bran flakes (she loved them).  You've probably tried a bunch of diet changes...  going gluten free helped my crohny the most.


----------



## dannysmom

Suzy - I am sorry that the dr cannot give you a medication to help our son. Have you tried warm heating pads? I've read some forum members use them. They even come in stuffed animal form. (just google stuffed animal heating pad)


----------



## my little penguin

Suzy
So sorry that was DS for a long time. Can you get back to a GI to at least get a flex sig scope?
WHen DS's rectum and later sigmoid  was inflamed nothing pain wise would help.:yrolleyes:

FWIW rectal inflammation will NOT show up in normal blood work  and fecal caloprotectin wont pick it up either since its at the very end. ( Nice I know).:ymad:

:ghug:


----------



## Momto2girls

Off to the rheumy this morning! May the force be with us....:yfaint:


----------



## Crohn's Mom

Good luck Momto2girls ! 

Suzysu , my nephew does that very same thing when he needs to poo. (he's not a crohnnie that we know of)  It is so sad to watch tho ! I don't know that he is "diagnosed" with anything, I just know that he has to take Mirilax consistently every day to help with the pain.  You may have said already, but I'm not sure if you have tried that ? :hug:


----------



## CarolinAlaska

Well, how did the rheumy go, M2G?


----------



## Momto2girls

She's fine! No arthritis! No rheumy concerns. Woo hoo! Super relieved. Geez my mind has been running away with me lately!


----------



## my little penguin

woo hoo for a good visit


----------



## Momto2girls

I know! So great to NOT have one more thing to worry about. So grateful.


----------



## Suzysu

Hi everyone - sorry Ive not been on in a while - I normally get emails when a thread im subscribed to gets a post but I haven't been getting them - I just assumed everyone was doing really well!!!!
So my question today is how does everyone cope when their little one is in pain and there is nouthing you can do about it?
Today Freddy's pain was building up all day - he couldn't sit down in the buggy on the way to school pick up and had to crouch on his feet in the seat, then during my older children's swimming lesson he was screaming (proper screaming) owww and sore mummy (even though I had already given him paracetamol) ended up not letting anyone touch him and sobbing in the corner (cue comments and looks from other parents). He is dairy and wheat free, and low sugar home cooked (except this luchtime we were out with friends and had an unhealthy treat - coincidence??). His bad pains last 2-4 hours so I know they will end but I just don't know how to deal with it - when he is bad paracetamol, wheat bags or distraction just dont help, when I wipe his bottom at a nappy change its like I am using sandpaper and by the end we are both in tears! - is there a nappy cream you can get with lidocaine or something in it?
The GP says there is nothing that can be done
I have a medical herbalist coming to see him on Friday and out next GI app is a week on Friday - the diarrhoea is back but no blood - if he had rectal probs would there not be blood?


----------



## CarolinAlaska

Poor Freddy and poor mama.  Any barrier cream is better than nothing.  When Jae's bum was bad when she had rotovirus I actually used Silvadene cream (made for burns).  Hopefully someone else has more recent experience with this as I have not had to deal with that for 12+ years, thankfully.  I know from personal experience how miserable a sore bum can be though and I feel for him.  Personally when my bum is bad, the only thing that relieves it is a shower...  Jae's Crohn's has never shown blood, but she doesn't have rectal disease.  I'm sorry Little Freddy is still suffering.  I know there are lots of us out there trying to cope with dealing with littles who are suffering.  You may want to post on the Parents and Carer's Support group... (Look in my sidebar).


----------



## my little penguin

we use calmospetine  but per derm anything with plain zinc oxide will work plus lots of "air" when ever possible.
since he is in nappies 
can he sleep  at night on an open diaper?
You can roll a towel or get a "doughnut" for him to sit on to take the pressure off his bottom. ( rectal prolapse trick)
for pain that won't go away BTDT- lots of hugs- back rubs. I would let him "play" doc with his stuffed animals and see if he can fix them when they have pain -maybe he has an idea of what would "help".

there is also a stomach massage - counter clockwise which can "help" a little - follow his cues-
we also got a tens unit- which took the edge off.- not pain away.

what meds has the gi given and what do they say about this constant pain??


----------



## Suzysu

I tried the 'air' thing and put him in pants this afternoon - cue moping up wee all afternoon!! He still couldn't sit down this morning but seemed much more perky this afternoon - quite happy playing with his cars (when not weeing all over the floor!!).
MLP - Normally tummy wheat bags, or rubs, plus paracetamol plus distraction does the trick with his pain but I think sometimes when its low down nouthing helps, he can't walk, sit, if I pick him up it hurts so often we just stand (well I crouch) and hug! He is on no pain meds - our GP said 'it's just colick, he can't have buscopan until he is 6' - In other words - man up!!
I love the playing Dr's with his toys idea! and I think carolin suggested a shower - he is not keen on the shower and we don't have a bath but thinking about it maybe I could fill a large basin or trug with water and he could sit in that for a bit - I think it's worth a go!!
Thanks guys!! xx


----------



## my little penguin

the "air" thing is more when he sleeps... but you would need a water rpoof pad for him to sleep on.


----------



## Mylittlesunshine

Hi Suzy the cream 
Have you tried fullers earth cream 
My friend swears by it x 
Hope freddy is feeling bettet


----------



## DustyKat

Sending loads of love and squishy hugs to you and little guy Suzysu...:ghug: 

Calmoseptine is a very good cream for nappy rash. Alternating with something like Ungvita is also helpful. I'm not sure that either of those is available in the UK though but there should be something equivalent. 

Sitz baths are also good. A bowl will work just as well or even a larger sink like a laundry tub. 

Thinking of you both! :heart: 

Dusty. xxx

PS. If you can't source good alternative creams I would happily send you a tube of each to see if they help. Just PM me.


----------



## cmoss

I'm so glad I found this forum! First of all, ALL of you are in my prayers for what you're dealing with. Would love to have your insight on my daughters situation.

At 8, after a year of no growing and a lifetime of tummy troubles (constipation and constant stomach aches) she was found to be severely anemic and required a blood transfusion. We did this at Hopkins where they also scoped her and found evidence that was "murky but suggested Celiac" plus she has one of the two genetic markers. 

Went gluten free and her belly improved unless she got "glutenized" then she'd be violently ill.

3 years later her iron levels were bottomed out so I pulled her out of school to homeschool, carefully watched her food intake and got her pretty healthy and well. A year ago after fighting a virus and not getting well her hemoglobin was dangerously low. We met with a hematologist at Hopkins and began weekly IV iron infusions (she can't tolerate oral iron supplements.) This appeared to be a miracle cure. She blossomed, had a ton of energy and just felt great. She decided in September she wanted to go to high school with her friends and life was good.

IN October she started feeling tired and picking up every virus around school. Lo and behold her iron levels had bottomed out AGAIN. So we started another round of IV iron therapy in January. Except this time the fabulous results didn't come. She got the stomach flu in mid-February and basically never recovered.

We saw the GI team at Hopkins almost 2 weeks ago. The dr. is hoping that she has an undetected bacterial infection and recommended an antibiotic and probiotics with the request to call her in two weeks and if unchanged we'll start looking at doing another scope. So, first antibiotic just made her worse (flagyl), and yesterday the nurse called in a prescription for Cipro. Still no improvement.

Her symptoms - constant pain, mostly lower abdomen, with occasional sharp "stabbing" pain in left abdomen, frequent bowel movements ranging from watery diarrhea to yellow, mushy ick (probably going about 10 times a day, as opposed to her old normal of 2 times a day.) She also reports frequent lower back pain and knee pain. I would never have connected the knee pain but was floored at the number of you that shared the knee pain symptom. She's also got almost constant nausea.

In addition to being gluten-free I've removed all dairy, corn and soy from her diet, but it's made no difference. It currently seems like each day she gets just a little worse than the day before. 

As for family history, my mom has Crohn's and I was diagnosed with irritable bowel years ago (though it mostly disappeared when I went gluten-free.)

Any insight, suggestions and support would be much appreciated. This is so frustrating! We've presently missed the last 3 weeks of school and my hubby is ALL over my case for not pushing her more to get to class. It's kind of hard when she's either doubled over in pain or can't get out of the bathroom. 

Thanks in advance!


----------



## Maree.

No advice from me as I think your much further down the path than we are.  Just wanting to say welcome and express my support.  So how long is it before you get in touch with the doctor again?  I hate the waits between appointments when things don't seem to be working (or feel like there going worse), it's just awful trying to keep your head above water.


----------



## cmoss

Thanks for the welcome! My doc is pretty accessible via email so I emailed her this morning and asked if there is anything we can do for the pain. Tums is it. Which is doing nothing. SIGH...Aside from that I'm supposed to report to her next Tuesday at which point we'll decide if the antibiotic treatment worked or if we need to do the scopes.


----------



## Maree.

:ghug::ghug: Sounds like a tough weekend. Hope it goes well & the appointment outcome is good.


----------



## my little penguin

Have they at least done imaging ??
I am surprised they are waiting to scope...
Any stool tests prior to starting the abx?
I would look to DuPont or CHOP for a second opinion Gi ASAP.
She has been suffering way too long.
Second set of eyes doesn't hurt and may even help .
DS has been given numerous types of drugs to help with abdominal pain even when they thought it was "just Ibs " in nature prior to crohn's dx.
Never has anyone just said take tums ...

Hugs


----------



## DanceMom

My daughter was given Hyoscyamine for IBS-like symptoms (stomach cramps, diarrhea, headaches, etc.).  It did not help her but it was worth a try.  Her GI also mentioned trying Neurontin if her pain continues.  I definitely think there are more options for pain besides Tums, but I would also be wanting to get to the root of the problem if I were you.  Be persistent!


----------



## cmoss

Thank you for the response!! She did have stool cultures, no bacteria found, but they felt antibiotic therapy could be warranted since this round started with a virus. No other imaging has been done. It was the nurse practitioner that said to take Tums. And responded that the antibiotics should reduce the pain. My thought to that was "if it's indeed a bacterial infection antibiotics MaY reduce pain, but if it's not...antibiotics won't do a thing...right?" 

I'm not familiar with DuPont or CHOP....but I agree that finding another practitioner may be a good idea. At the least it can't hurt. We really like our team at Hopkins so far and she said she opted for antibiotics first before scope because she was hoping to go least invasive first. Clearly antibiotics don't seem to be the answer right now. 

Do you hear the sound of my head banging against the wall over here? I'm sure ALL of you do! Not that I take any joy in what you're all going through, but it sure feels good to be somewhere where people understand what this is like. Thank you!!!:ybatty:


----------



## cmoss

Thank you, DanceMom! Now that you mentioned Neurontin I remember being on that myself when my IBS is bad. Her pain is so bad she cannot make it to school for even one hour. Something has GOT to be done. I guess I need to get my big mama bear pants on and start getting aggressive!


----------



## poppets mum

Has anyone tried anything that is effective at relieving IBS pain? Sooo frustrated here as dd has been in a bad pain flare up for weeks and nothing we try relieves it. Aaargh. She keeps saying she wants to go to ER, which usually she tries to avoid. The last few days Miralax doesn't seem to be as effective either. Was on toilet for an hour before she produced anything and was crying in pain.


----------



## Catherine

Cmoss

Gather from your posting that your daughter has anemia caused by low iron.  We treated my daughter's anemia for 3 years prior to dx.

We allowed a gp to advise us the only further test he could do was a colonscopy but the test was too invasive for someone so young (she was 16 at the time) so it was not done at the time and instead she was dx her with ibs.

Keeping pushing for answers.

Ps ibs should not dx when anemia is present as per GI:ybatty::ybatty:


----------



## my little penguin

You want to go to another hospital for the second opinion.
This will truly get an independent opinion which is what she needs.
Dupont would be close if your at hopkins and CHOP is in philly .
CHOP is #1 in the country for their ped GI program.
most 2nd opinion take a while so start the process today ( it can be as short as two months or longer).
YOu can always cancel an appt is my theory.

DS had his first upper scope at 6. Upper and lower scope again at 7 and 1/2 when he was dx. 
you know your kid best so push for answers


----------



## Dexky

Welcome CMoss!

I agree with MLP!  With your family history and her continuing problems, a lot could have changed in three years since her scopes.  Keep pushing and good luck!!


----------



## Crohn's Mom

Welcome Cmoss 

We're glad you found us too, but sorry you have the need. 
I also agree with MLP in getting a second opinion if the team at Hopkins does not schedule scopes quickly. 
This rollercoaster of pain and feeling unwell isn't good emotionally for your girl either - how is she doing with friends and activity outside of school issues? 
:hug:


----------



## cmoss

Crohn's Mom - she is starting to become depressed, not surprisingly. She's not feeling well enough to attend school (been out for 3 weeks now, fortunately the principal is amazing and is working with us), missing out on her favorite activity of theater and just missing being a teenage girl and hanging out with girlfriends without much of a care in the world. It saddens me!

My Little Penguin - do you know much about Children's National Medical Center in DC? I only ask because that's even closer to me and I have two friends that have recently had their kids there with Crohn's and suggested that I take Mandy there. Wondered if that would be a good place to get a second opinion or if you know that CHOP or DuPont would be even better? 

At this point, as you all well know, I just want her to feel better! 

Thank you, thank you, thank you for the information and support!


----------



## cmoss

Also - just as an aside here, the doc at Hopkins said she wanted to treat with antibiotics first and NOT scope because Mandy's CRP level was normal and sed rate was not high, which indicated to her no inflammation.....I know from a little bit of digging I've done that not everyone with IBD shows on the lab markers. I wondered what your personal experiences with that have been?


----------



## DanceMom

My daughter always has normal labs too and that did delay her diagnosis.  Our GI described it like this - enough pieces of the puzzle have to match up to make a diagnosis of Crohn's.  My daughter has genetic markers that indicated Crohn's (Prometheus Lab), an MRI and x-ray that showed inflammation in the small intestine, scopes with biopsies that showed non-specific inflammation in small and large intestine, a pill cam that showed rapid transit and at least 1 ulcer in the small intestine, and a biopsy that showed erythema nodosum.  She also seemed to have a growth disorder, chronic diarrhea and stomach pains, and most recently had bloody stool.  Per GI, her chart wasn't a "slam dunk for Crohn's", but enough pieces fit together to finally make a diagnosis.  I think the key is finding a doctor willing to take the time to put those puzzle pieces together.


----------



## cmoss

That is a very good way to look at it DanceMom! And that is exactly the thing -- finding a doc that will put the pieces together. I already "fired" one of the Hopkins GI docs when he told me in January that 1- he found it hard to believe Mandy really did eat gluten-free, 2- there was no evidence at all to indicate Celiac from her scopes 8 years ago (when I knew otherwise) and 3- genetic markers don't mean a thing.......I complained to my hematologist, who was trying to work every angle he could to help us diagnose without stepping into GI territory (funny - my Hopkins hematologist recommended UMD for GI care....) So when we saw the new doctor at Hopkins, who happens to be the chief of Ped. GI there, the first thing she says is "I see her biopsy showed non-specific inflammation & evidence of Celiac but it was a bit murky". She seemed much more open to "exploring" and did say that if in two weeks time antibiotics did nothing we'll plan to do scopes. Her reasoning - talking to my daughter, was that my daughter was terrified of going through another scope and this doc said "let's try the least invasive treatment and see if it works, but if not we WILL need to do scopes." When they did the genetic markers years ago they only did Celiac, not Crohn's. This coming Tuesday will be two weeks, so we'll see how quickly the doc will move on the scopes. In the meantime I'll also follow MLP's advice and start lining up a second opinion somewhere else. Just trying to decide on where -- I was already torn between UMD and Children's in DC, then MLP threw in CHOP and DuPont....where to go?


----------



## cmoss

Catherine, your post got buried! Sorry I did not respond quicker. Interesting about the anemia/no ibs dx. I had no idea. It sounds like we've had quite similar backgrounds with our kids. Thank you for the information!! These docs are enough to drive us to the looney bin


----------



## Mehita

My son's labs were completely normal at dx, but colonoscopy and endoscopy visually showed otherwise. Biopsies confirmed his Crohn's (and Celiac). I like DanceMom's doctors approach of putting the puzzle pieces together. Totally makes sense!

I think there aren't (or shouldn't be) any hard and fast rules for pediatric Crohn's. This disease is just too unpredictable.


----------



## my little penguin

honestly I would try for the second opinion at chop- if your going to go you want to go somewhere  they see hundreds of kids like your child not just a few
even if you end up scoping at hopkins-point being when a kid doesn't show classic signs everyone questions well it could be .....
we still see our first gi but had 2 second opinions since Ds is not a classic case.
our gi liked having a new set of eyes look at the charts and tests etc... 
it also helped us with meds etc.. since meds are scary and you really want to be sure what you are treating.

good luck.


----------



## dannysmom

Welcome cmoss - 
My son has been to the same doctor at Hopkins ... for his 4th GI opinion. I agree with MLP ... schedule the CHOP visit so you have it in case you still do not have answers and treatment from Hopkins by then.  Can your school send tutors to you home so your daughter will not fall too far behind? I fully support your daughter staying home when she feels so poorly. My son ended up needing 3.5 years of home tutors but has been able to attend high school this year (10th grade). Is your daughter in 9th or 10th grade?


----------



## Suzysu

Hi cmoss and big hugs for you and your daughter - If this second lot of antibiotics isn't working I think I might push for the scopes especially with your family history, and with her being so anaemic - it all sounds a bit suspicous - I really hope she recovers soon - let us know how she gets on xxxx

We had our GI app today - They think Freddy has proctalgia fugax and anal fissures and are putting him on glyceryl trinitrate and movicol - anyone have any experience of this? Everything I've read about it so far suggests the pain only lasts a short period of time, Freddy's tend to build for days and then the severe pain lasts for hours so I'm not sure but will give the new meds a go!

I hope everyone is well - I don't seem to be getting the email updates so am out of touch with everyone!! xxxx


----------



## Suzysu

I didn't get to see all the recent posts until I posted the above - sorry if its a bit out of date now!!!! xx


----------



## poppets mum

I really hope this treatment works for Freddy. You and the poor little fella deserve a break.


----------



## mum2boyz

Hi all,newbie here. Basic history i have been constipated since i was 6 so that's about 26 yrs of it,my partner is awaiting colonoscopy results for rectal bleeding & diarrhea, my 11 yr old is constipated too and has been on movicol for yrs,now my 6 yr old is having problems. He's the one i'm here to discuss,i'll discuss myself and my oh on another thread. So he's 6, constipation from birth,put him on a comfort formula and he started going a bit too much,horrible runny nappies a couple of times a day. His growth was always fine/above average. In the last 4/5 months he's been having a lot of issues,he's pale,tired all the time,would sleep 14/15 hrs a day. Constantly complaining about stomach pain and pain in his legs/feet. Going to the toilet a lot but sometimes constipated. Just after christmas he developed a spot on his face and started vomiting,it quickly turned into an abscess with a high fever (40 deg),he was on antibiotics and it went down. A few weeks later it popped up again and had to have more antibiotics. It's still visible on his face but it's 'down' at the moment. His bum is often covered in red spots and he's constantly itching it. Our doctor is very laid back and for ages said it was anxiety issues,won't do anything about the spot on his face til it's been there a yr and after 3 mths reluctantly agreed to do bloods,iron levels only. His iron level was fine but the iron stores were low. He eats meat every day,drinks lots of water,eats lots of fruit and has fibre every morning so has a good diet. I feel there may be something going on like crohns but not sure how/where to push and if it may be nothing at all and i'm just being over anxious? Any thoughts/advice appreciated,thanks


----------



## Suzysu

mum2boyz - you know your little guy best and it certainly sounds like there could be something going on - you just have to keep pushing your GP (I hate to say it but breaking down in tears often helps). Surely they did a full blood count and tested his white blood cells at the same time not just the iron levels?? I hope you get some answers soon.


----------



## Catherine

Just a though could the red spots on his bum be trush?

Try and get a copy of his blood test results.

Sorry you had to find us.


----------



## Dexky

Hi mum2boyz!  I don't think you're being over anxious!  I think that doc needs to get off his arse and do something for him!  If he won't, I hope you find another who will!  Good luck!


----------



## CarolinAlaska

Cmoss, has your child had a fecal calprotectin?  It is fairly specific, not invasive, and shows inflammation in our child when all the other labs are negative.

Mum2boyz, I'm wondering about MRSA or a systemic candidiasis for your dear child.  Sounds like he is too miserable to stick with a doc that is too laid back to pursue diagnosis and treatment.  I'd get a second opinion...


----------



## mum2boyz

Thanks for replies,
I do give out regularly about the doc but she is local and convenient,time to branch out i think! I checked him again this eve and still loads of red spots,will certainly get him checked for thrush,it hadn't even crossed my mind tbh,will update when i find out more,thanks again x


----------



## cmoss

First off, thank you all for the overwhelming support and second, I apologize for disappearing. Between work and computer problems I was able to access via my iphone but it was too cumbersome to reply that way! 

Mandy has not improved but the good news is she goes tomorrow morning for her colonoscopy/endoscopy at Hopkins. I'm on that fence of wanting them to find something so we have a diagnosis and direction to go and not wanting them to really find it. I know you ALL know what I mean!

If there's any words of wisdom you experienced moms can share, I'm all ears. She had one done when she was 8 years old, but that was 7 years ago! 

I will say that I had to call the nurse today regarding her bowel cleanse. Instructions were to take 4 dulcolax capsules at 8am with lots to drink then at noon 8 capfuls of miralax mixed into 64 oz of beverage of choice. Call if bowel movements are not clear by 4pm. Well, at 11:45 her bowel movements were clear diarrhea...crystal clear. The nurse said she'd never seen such a quick cleanse before but based on that to go ahead and do only 1 capful of miralax with 8oz fluid to be sure she's done and keep drinking rest of the day. Any insight into the quick cleanse? Mandy just laughed and said "Will I ever have a doctor or nurse NOT say "well that's unusual" about my test results or symptoms?" Poor kid. 

The biggest complaint with her right now is the pain. Constant across her lower abdomen sometimes pretty bad in left lower side. She's also complaining of a lot of lower back pain. Still having frequent (about 10 times a day) bm's. Loose but not diarrhea. No more blood that I've seen.

Keep us in your thoughts and prayers tomorrow. I will most definitely post here with the doctors feedback! And yes - I am lining up her second opinion...waiting for my husband to give me the go ahead. He wanted to do a little research of his own. 

I hope everyone is doing well!
Christy


----------



## Maree.

My 10 year old (undiabnosed) has a colonoscopy/endoscopy tomorrow morning, so can totally relate to both wanting them to find something (I'm leaning that way, as he's so thin) and hoping they won't.

We are having the opposite experience in terms of prep.  Things are going very smoothly, I suspect we are going to have a dreadful night, hopefully it will kick in at some point during the night cause otherwise I guess will have to be rescheduled.


----------



## cmoss

Maree, good luck with the cleanse! I hope it kicks in for him soon. The last thing you want is to reschedule! My daughter is - and has always been - really thin, too. 

Be sure to let us know if you do make it in tomorrow!

Christy


----------



## CarolinAlaska

Christy, Maree, Mandy and Liam - thinking of you as you prepare for the scopes tomorrow.  I hope the findings are reassuring and fixable!  Your children are in my prayers.


----------



## Crohn's Mom

Sending my best wishes that the scopes are going well and you all get some answers ! :ghug:


----------



## cmoss

Thank you everyone! Well, scopes went well. The doctor said there was nothing that he could see visually that indicated Crohn's or Colitis. No signs of bleeding. But he also cautioned that we would know for sure until biopsies come back, which is another 7-10 days. Meanwhile she's still in pain. Even came out of anesthesia complaining of the pain in her lower left side. For you experienced and uber knowledgeable in the group does a visual study via colonoscopy truly rule out Crohn's? I know they're now leaning towards diagnosis of IBS. Clearly I don't wish Crohn's or colitis on her, but don't want it to be missed, as I hear of so many that go through that!


----------



## my little penguin

Nope - DS had a visually good colonoscopy 
Horrid biopsies

Other here had normal upper lower scopes but only pill cam showed it.
For others the MRI showed it.
There is no one test that can rule it out .
But lots that can rule it in
Good luck


----------



## Farmwife

Same here cmoss....Grace had "clean scopes" and the GI send us on are way. I got the call the NEXT day about the biopsy results and  he (GI) said their was damage at the microscopic level.


----------



## CarolinAlaska

I think the biopsies will show more.  Will your daughter have a pillcam or MRE?  For us the final test was the pill cam 9 days after the upper and lower scopes showed inflammation and ulcers throughout.


----------



## Josephine

As parent with Crohns, I am always told that over caution with my children  but my middle daughter suffer with mouth ulcers, developing curve in her spine, Acid Reflux and had three accidents sort made to toilet at home with linger stomach pain beneath her belly button and get bad then need loo but had D.

I am planning to get her see GP and get blood test Cealic it run the family.


----------



## CarolinAlaska

Josephine, I'm sorry to hear about your daughter.  Having Crohn's opens our eyes to lots of symptoms, doesn't it?  I hope you're wrong and this is just a fluke, but sounds like it is definitely worth checking it out.


----------



## Josephine

CarolinAlaska said:


> Josephine, I'm sorry to hear about your daughter.  Having Crohn's opens our eyes to lots of symptoms, doesn't it?  I hope you're wrong and this is just a fluke, but sounds like it is definitely worth checking it out.


Hi, I hoping at I am wrong but something inside is tell me that I am right. 

I have just spoken to her, she still has stomach pain and two ulcers.

I wish it was weekday so GP Surgery was open.


----------



## Forjake

Hi there, I'm mom to Jake a very loving little 4yr old. Jake has had health issues since birth. A skin biopsy revealed Mastocytosis at age 9mo,asthma,gerd,sleep apnea,severe restless leg syndrome, disaccharide malabsorption, vit d def, and anemic. Poor growth, and belly pain and diarrhea daily. Positive blood in stool, positive lactoferrin, negative for infection or parasites, colonoscopy and endoscopy scheduled for June 10.. Any thoughts? Looking for answers, does positive lactoferrin always indicate IBD?? Hope all these kiddos get answers.


----------



## dannysmom

Hi Forjake - 
I think a positive lactoferrin could results from any cause of inflammation, infection included.
Good luck with the scopes. Is Jake on a special diet now?


----------



## Forjake

Jake is on a histamine free, dairy free, gluten free diet since about nine months. He is negative for infections and parasites as well. Hopefully scopes will give more info/ answers. /


----------



## my little penguin

Is he on the usual masto cocktail ?
H1 /h2 blocker plus mast cell stabilizer ?
Hope the docs figure it out and they get him back to being a kid


----------



## Forjake

Yup they both are, and gastrocrom ( cromolyn sodium)


----------



## Forjake

Me too , it's so hard for them, hot days are the worse


----------



## Farmwife

Forjake said:


> Yup they both are, and gastrocrom ( cromolyn sodium)


Grace is on this too. How many times a day does he get this. Is it in a neb or drops in water?


----------



## Forjake

They both get both forms,four times a day


----------



## cmoss

Hi everyone! Hope you all had a nice holiday weekend with not too many tummy upsets (at least for those in the US). 

I did hear back - fairly quickly, actually from CHOP. She is scheduled to meet with two doctors there on Mon. June 24. Only one of the doctor's names is listed on the CHOP site and I couldn't find much info on either of them via a web search. Dr. Lyndsey Albenberg and Dr. Melissa Kennedy. Albenberg is a DO, which I thought interesting. 

My poor girl is still in a lot of pain so I'm praying that there will be some sort of relief between now and then. The school is being great working with us to get make up work done. Thank you all for your support and advice!


----------



## Sickboy11

Hi I am new here and have been reading some of the post about your children. Some sound very familiar whilst others different, but I totally understand your frustration, concern, care and distress for your child.
My son two years ago started vomiting daily and having terrible tummy pains. They took out his appendix. He still continued to vomit but took some flagyl and felt better and then had a endoscopy and showed nothing. He was then diagnosed with over growth of bowel bacteria. Still felt sick and we had an appointment with his allergist as he has had an anaphylaxis attack with kiwi fruit. She did skin prick testing and came up positive for dairy. Strange at the age of 10 with no previous dairy allergy.
He was fine for 6 months and she did a milk challenge and failed really bad and she thought he had FPIES to dairy.
His tummy was never the same again. He had continual vomiting especially at night, constant diarrhoea and constipations and nausea. Took him back to ped dr and then to gastro and tested again for bowel bacteria but it was negative. Gastro told him he was making it up and wanted him to see physiologist. Never went back to him again. Saw another ped dr and he diagnosed chronic constipation and put him on laxatives. He felt better but this gave him more pain. Had to wait six months to see new gastro dr. He had an X-ray which showed inflammation in colon.

New gastro dr endoscopy and colonoscopy the next week. He found proctitis in his rectum. He had three weeks of suppositories and felt a little better but not fully. Back to gastro dr as still had alternate constipation and diarrhoea, so he put him on new diet - FODMAP. Which is basically boring and plain food. 
After being on this diet for six week, he really isn't any better, but has two stools with mucus and some blood when wiping his bottom.

He sees gastro dr next week, so have to tell him these new symptoms. I think me proctitis is back. Gastro dr is concerned it is early stage Crohn's disease and will send him for MRI to rule it out before making any diagnosis. If it isn't Crohn's disease then it could be ulcerative colitis or just proctitis. 

So he is undiagnosed at the moment and it is very frustrating coz he doesn't know what is wrong with him. 

Does anyone have any ideas or advice for me? 

Thanks 
K


----------



## Sickboy11

Oh I also forgot to say he is now vitamin b12 deficient since march and previous bloods in November were fine. I wonder if it was more from laxative use rather than malabsorption ? I will tell the gastro dr next week as he has been on holidays. My son now also has an enlarged thyroid goitre and needs an ultrasound next week and bloods before we go to gastro dr. My son is over being poked and prodded and just wants to know what is wrong. Thanks kathie


----------



## CarolinAlaska

Sickboy11 said:


> Oh I also forgot to say he is now vitamin b12 deficient since march and previous bloods in November were fine. I wonder if it was more from laxative use rather than malabsorption ? I will tell the gastro dr next week as he has been on holidays. My son now also has an enlarged thyroid goitre and needs an ultrasound next week and bloods before we go to gastro dr. My son is over being poked and prodded and just wants to know what is wrong. Thanks kathie


Hi Kathie, sorry your son is so sick and not getting answers.  Faking it?  Really?  Sheesh!  My daughter hates all the poking and prodding too, but seems to be taking in now much better with her diagnosis.


----------



## Sickboy11

CarolinAlaska said:


> Hi Kathie, sorry your son is so sick and not getting answers.  Faking it?  Really?  Sheesh!  My daughter hates all the poking and prodding too, but seems to be taking in now much better with her diagnosis.


Yep that's what the head gi said at the local kids hospital said and so did a ped dr. Anyway on another thread another lady said about doing a fecal calprotectin stool sample so will as my nice gi dr and he will prob send him for MRI for suspected crohns as the diet hasn't worked and still get constipated and has breakthrough diarrhoea and other times four times a day of diarrhoea. 

Being on the special diet really hasn't made much difference except now seen mucous and spots of blood when wiping. 

The problem is that he sees the gi dr next week which is great but the week after he goes away for two days and just one night for school. Don't know how he is going to go to the toilet and then then will have to wait 20minutes for him whilst he goes to the toilet. 
Did your daughter get put on the nutritional drinks or just meds?

Hi Gi dr really suspects the early stage crohns so I don't want him to miss it if he does have it, but fingers crossed its only proctitis. 
Thanks for your help and support


----------



## Farmwife

Hi Sickboy11
I was wondering if the scopes showed any other changes to the GI track. Even if it was on the microscopic level. Did you get a copy of the reports?
Does your boy have any other problems? Like skin, joint pains or vision? Not that you have to have these but they might help fill in the picture.

Also I saw in your other thread that he was on pred suppositories for awhile. Was he off of them for the scopes? If so for how long?


----------



## Sickboy11

Hi,
The biopsies only showed the proctitis even though a simple X-ray taken before the scopes showed inflammation of the left side colon and only left a small amount of room for the fecal matter to pass through. He went through them but I didn't see the paperwork he just said that this had shown up in his rectum. On the day of the scopes he showed me photos of his rectum and its all red and sore with spots and bruises and bleeding under the lining. 
I suspected UC but he is more leaning towards crohns.
The prednisone suppositories were given after the scopes after the dr saw the proctitis. Before the suppositories he had a lot of joint pain like knees and ankles and this went away after about a week on them. I had just put it down to lack of calcium being dairy free due to positive skin prick test the year before. He has some vision problems and needs glasses at times but he refuses to wear them. 
Today he had four diarrhea poop. He hasn't lost weight but prob put on a bit and has grown a little bit so I know he isn't as bad as some other kids but he is exhausted and tired and imagine having like gastro or food poisoning day after day. Not nice for anyone and I know lots of people suffer poor things.
Will just have to wait to see gastro next Friday. 

Thanks for your help 

Kathie


----------



## cmoss

Good afternoon, everyone! Needed to vent a bit and thought I'd update as I'd not been on here in a while except to read and lurk on work breaks. 

We got into CHOP (thanks for the push on that MLP) and the doctor immediately said we can't rule out or diagnose anything until she has a pillcam. The CHOP doc said she knows the Hopkins doc, so for logistical purposes it made the most sense to do the pillcam at Hopkins with the CHOP GI consulting on it. She emailed me the order, I forwarded this to my Hopkins doc who won't budge until she has the full transcription report from CHOP. So while we could have scheduled the pillcam last week and maybe completing it this week, Hopkins is posturing and still refusing to schedule. I'm so fed up with Hopkins!! Meanwhile the daughter is STILL in terrible pain. CHOP did give her an RX of Levsin. She said she notices maybe a tiny bit of relief from it but then it seems to get worse, almost like rebounding pain. Fabulous. The CHOP doc did agree that with the chronic, long-term and yet-to-be explained anemia coupled with the abdominal pain and frequent loose bm's it really sounds like it could be Crohn's THOUGH my alarm bells did go off when she said this pillcam will either confirm it or completely rule it out. I keep remembering everyone here saying nothing really rules it out....Thank you all for being such an incredible source of information! I was able to go into that CHOP appointment armed and ready with questions. I'm thinking at this point we'll get this test done with Hopkins and then probably try to get in with a GI doc at Children's National Med Center in DC to see if they take our issues more seriously.


----------



## my little penguin

One thing to consider - is it that your insurance won't cover the pillcam?
Some times the stall is due to "working out" the insurance side even though 
Most wont say that until they are sure - insurance won't cover it.
Btdt with humira . 
It took a while to get it approved but our Gi didn't want us to worry about it until they were sure either way.
I know pillcam is not covered for us and it took 6 weeks for the insurance to get back to the doc to tell them this .

Good luck and keep pushing


----------



## dannysmom

I hope you get the pillcam worked out soon. Sorry this is frustrating.


----------



## CarolinAlaska

I'm sorry that it seems like you are working in molasses!  I hope that one of the hospitals will get the thing scheduled so your poor daughter can move forward!  Hugs to both of you!


----------



## TonysMom

My son is waiting on the Pill cam he has a Diagnosis as of 2006. But insurance wont cover Pill cam till an x-ray is done. He has constant infections due to his Crohn's. I read the Chronic Mono-and heard that for years with him. They even thought it was his heart. So many test no answer's. Then the answer came and Doctors still dont get it. Last episode was a few days ago-Heat stroke and an Infection. First Hospital decided to do a Spinal Tap on him even tho he was delirious and did not even know who his wife was.Now At the hospital where all his doctors are and they are attempting to repair the damage done by the spinal tap. My advice is to not accept what a doctor or Hospital tells you unless you are confident that they  are the right Medical for you and your situation. I get Angry at Doctors who do not listen. And today my son is suffering for it.


----------



## DustyKat

Oh my Tonysmom...:ghug:...your son sounds like he has been through the wringer and more!  

I hope he soon over this latest episode with the heat stroke. Good luck! 

What is going on with his Crohn's? 

Do you want to start a thread in the main section of the parent's forum and let us know what has been happening? 

Dusty. xxx


----------



## Crohn's Mom

(((Hugs))) Tonysmom ,

How's he doing today? 
It's so hard seeing our children suffer no matter the age ...


 HD


----------



## Sickboy11

So after seeing the GI dr again and he is unsure what is happening as my son as he putting on weight but has flares of diarrhea up to 7 times in a day. He is suspecting irritable bowel but is concerned of the b12 deficiency and even after injections it is not stabilising and goes back down. He said to try Metamucil and see if that helps with bulking the stool and hope won't cause constipation. He also said he might rescope him in September when we see him again. He can't do the capsule camera as in Australia he needs to be anaemic to qualify. 
So we are stuck again and not knowing what is wrong. How can a child keep surviving doing this many diarrheas in one day and become dehydrated. My heart goes out to any kid that has to live with this lifestyle.
Does intermittent diarrhea like every 3 days once or twice and then three or four days of worse diarrhea sound familiar or could it be irritable bowel?


----------



## DustyKat

Hi Kathy, 

Sorry to hear your boy is still suffering.  And also sorry that I missed you earlier on, I was off the forum for a couple of months. 

Just a couple of questions: 

Has he had the MRI? 

Has he had a Faecal Calprotectin done? 

Since Proctitis is a less severe form of Inflammatory Bowel Disease I think we need to rule that in and if IBS is playing a part in it then it is over and above the IBD. Diarrhoea was not a feature for my two so I have no experience with that aspect of things, sorry. 

I can think of a few things you can do that may help point the docs in the right direction: 

Do you track and document his symptoms? If not have a look at these suggestions that I have lifted from the wiki:



> *PAIN*
> *Where is it located.
> *What is it like - stabbing, ache, constant, intermittent, etc.
> *Rate your pain on a scale of 1-10, with 10 being the worst pain imaginable.*(see comment).
> *Was there anything you did that relieved the pain - medication, hot packs etc.
> *Was there anything you tried that didn't work.
> *Is there anything that the pain stops you from doing - standing up, walking, sitting, etc.
> 
> *OTHER INTESTINAL SYMPTOMS*
> *Is your stomach noisier than usual.
> *Are you producing gas.
> *Is the gas offensive.
> 
> *STOOLS*
> *How often do you go.
> *How much are you producing each time.
> *What does it look like.
> *What consistency is it.
> *Is it offensive smelling.
> *Is there any blood or mucous.
> *What colour is it.
> 
> *DIET*
> *Are you following a diet or have you eliminated any foods from your intake.
> *Are there any foods that make your symptoms worse.
> *What is your appetite like.
> *Does your appetite fluctuate.
> 
> *WEIGHT*
> *Are you losing, maintaining or gaining weight.
> 
> *OTHER SYMPTOMS*
> *Do you have other symptoms that accompany painful episodes or do you suffer with other symptoms generally, such as:
> headaches
> eye problems
> joint aches
> vomiting
> fever
> sweats
> rashes
> mouth ulcers
> 
> *MEDICATIONS*
> *What time did you take your prescription medications
> *Did you take any over the counter medicines, even for something unrelated to your IBD
> *Have you been taking any supplements
> *What is your impression of the effectiveness of the medications you take. Are they making a difference.
> 
> http://www.crohnsforum.com/wiki/Diary-Inclusions


I found keeping a diary made it far easier for me to remember things as it can become so confusing when you are living this day in and day out, as you no doubt know!, and having it in black and white can make it harder for docs to refute. 

Do you get on with your GP well? 
If so I would ask that he test for the following...

Faecal Calprotectin, if not already done. (Not sure if the GI needs to request this)
Have they been doing blood inflammatory markers. If not ask for CRP & ESR.
Iron Studies.
You are already having B12 done. 
Vitamin D
Zinc 
Magnesium

...if there are deficiencies some of these tests may point to small bowel involvement. 

If you are going to start psyllium be sure and start slowly, as in a level teaspoon at first and then work your way up. If he is taking any supplements or medications make sure he doesn't take them for 1 hour before or two hours after the psyllium.

Good luck mum, I hope you get solid answers for your boy and soon! 

Dusty. xxx


----------



## Mehita

Maybe I missed it sickboy11, but has he been tested for Celiac?


----------



## Mehita

Ah, never mind. I see you did the FODMAP diet in an earlier post.


----------



## Mommyto2

Hello,
I am a mother to 2 beautiful little girls. My 3 year old has had digestive issues since the day she was born. We have been passed through the medical field with everything from FTT to autsim to dairy/gluten allergies, reflux, anxiety, etc. I am looking for help as to what I can do to help the doctors find the root cause to what is happening with her.


----------



## BoyMama2000

One simple test to ask for is a stool test for Fecal Calprotectin.  You just need to collect her stool and bring it to a lab for them to send away.  It should be refridgerated after you collect it with your initials, time and date.  It is a simple way to determine if you need to further investigate inflammatory bowel disease.  If the number is below 50, it is not likely the issue or she is in temporary remission. It may be best to do when she is fairly symptomatic.  If it is between 50-250, it is a gray area and they may monitor this. If it above 250, it is appropriate to do an endoscopy, colonoscopy and possible small bowel follow through to see if there is signs of Crohns or Ulcerative Colitis.

If any of my other two boys get symtoms of Crohns, this will be the first thing we get done!

Best of luck to you.  I sincerely hope it is something mild and that she will outgrow but it is something you need to keep pursuing until you feel you have covered all of your bases.  You will find from those of us who deal with the healthcare system (I work in it as well) that you absolutely have to advocate for you and your kids and connect dots for providers to ensure quality care even with the best of doctors!


----------



## my little penguin

Actual anything below 150 is normal for kids under 9
Then it goes to 50 .


----------



## BoyMama2000

Thanks for informing correctly.  My son was 13 when diagnosed so I didn't know that!


----------



## Sickboy11

Hi thanks for your replies. After seeing GI dr in July it is looking more like IBS rather than a IBD. He is putting on weight. I did suggest to the dr about the calprotectin test. He said he is further into his investigations than that. The severe diarrhea has seemed to stop to now only every 7-10 days. So my gp is going to get him to have an other X-ray to see if any inflammation shows up this time again. Or is it constipation with break through diarrhea. We see GI DR in sept and then he will decide if to do a MRI or repeat a colonoscopy and an endoscopy. Next time I see our GP I will just ask him for the test anyway just to check the level and rule it out. His allergy dr really thinks he has lots of food intolerances but can't work out to what even with a FODMAP diet. So she wants to test him for Mast cells and the level. My little boy does not like blood tests so we are saving up all the tests and do them all at once when we get a few more tests needed. It probably will be IBS with some food intolerances causing some of it. Thanks for your concern xx


----------



## Sickboy11

Sorry didn't read earlier posts - tested with the whole panel of celiac markers - negative. All comes back negative except the X-ray which showed inflammation in the left side colon and proctitis. He is only now in a little pain and that's more when he is about to have diarrhea. He is coping a lot better and the vomiting has stopped. I just think he was so
Blocked up, he was being poisoned by being constipated and had break through diarrhea. Now if we can control his constipation we might be slowly getting better. He was on one capsule of Metamucil but after 4 weeks we stopped as it was causing 6-9 bowel movements a day full of mucus. Poor kid couldn't go to school. He now goes to the bathroom twice a day most days so I am hoping being very regular will help him from stop being constipated.


----------



## BoyMama2000

The defining difference with IBD and IBS is that no inflammation is seen in the bowel in IBS. No offense to your GP, but FCP is a good test to do before putting him through a colonoscopy or other invasive tests and is much more predictive of IBD than an x-ray.  An x-ray is not really a great test for detecting IBD. You can't see soft tissue inflammation at all so I am not sure how it was determined he had proctitis on x-ray. Perhaps he just visualized this.  I would push for it.  It is a test that is more and more accepted in the GI world but very new and uncomfortable for GP's.  Perhaps you will need to wait until you see at GI because the GP won't really know what to do with the information.

My son has totally normal bowel movements (disease in the ileum only) and normal blood markers for Crohns.  He stopped growing and this is how he was diagnosed ultimately with a colonoscopy and a video capsule endoscopy.  The fecal calprotectin test is the only test that lets is know what is going on inside.  6 months he developed his first agonizing symptom of Crohns with a perianal abscess and fistula.  When the abscess flares up, his fecal number is up.  When it is healing, his fecal number is down.  It really has been the only test that is not invasive that shows us his condition and allows us to adjust medication.  For such a young kid, I would prefer it because you don't put him through anything additional!

It sounds like he is holding on for now so perhaps waiting for your GI visit will be ideal.  The Fecal Calprotectin takes about 10 days to 2 weeks to get back and could be valuable information for your GI doc if it is done prior.

Hope he gets better soon.  I have IBS and had a colonscopy after my son was diagnosed on request of my doctor.  I was totally normal in there but have a LOT more bowel issues than my son with Crohns.  It can be awful in itself!  I eat low residue foods and drink a lot of water when I feel I am having issues.  I have to say that it is one thing that has gotten much easier with age for some reason!


----------



## Sickboy11

Thanks for that. I will keep on top of it. It was the GI dr that didn't want to do the calprotectin test, so I didn't push it but will ask my GP soon and allow enough time before we go back. The GI dr wasn't to concerned either about the depletion of vitamin b12 to nearly zero, but my GP was worried and gave him injections which he wasn't happy about !! Oh well, we will see what happens with the fecal test and X-ray and see if GI wants to see about doing repeat scopes as he really wants to make sure it is not a IBD and the proctitis has cleared up and everything else is ok. 
Thanks again.


----------



## Mommyto2

We currently have a referral with a GI doctor now, but when she was in to see her new ped for the first time, she was very concerned with what she was hearing and seeing in teh medical history. The doctors have removed her from gluten free diet so that they can do a biopsy. She have had blood tests done regularly where they have all been normal, but other than that that she has not been tested for anything, just passed between doctors and specialists.


----------



## Farmwife

Hello and welcome,

Sadly our stories sound very similar.
My girl is four now but has suffered long before this.
NO DOC WOULD LISTEN.
 How could I be telling the truth, how could it be that bad when she smiles like that. 
Also she was putting on weight and she was constipated and as we ALL know she can't have anything like this.
Well they did a scope and found not one but two diseases. I felt horrible for not fighting even harder for her. 

I was given some wise words by our dearest DustyKat:hug:, MAKE THE DOCTORS EXPLAIN WHAT YOU SEE IN FRONT OF YOU.
If what the doctors are saying about your girl don't match what your seeing.........
 I would question, question, question.

BTW Grace had normal labs.


----------



## ali79shine

My daughter is undiagnosed

16yr female
Currently has HS(Hidradenitis Suppurativa)
Undiagnosed Bowel Disorder for 6 yrs

We have been back and forth and back and forth, everyone writes this off as IBS. Here's a pill and some zofran, take Imodium and you will be fine.

Well I'm sick of these answers, there is something wrong with my daughter! I took her to Childrens Hospital in Seattle last year and he basically ruled out a few things with blood work and said she has IBS.

I took her back 1 week ago due to more severe D and tummy pains. They ran more testing and did stool tests. Here's what we found so far:

NEG- Parasits
NORMAL- Liver Enzymes
NORMAL- for Celiac
NORMAL- Allergey for foods
LOW- Albumin
HIGH- CRP Inflammatory

We are still waiting for the stool to come back that shows inflammation in the colon. If that show inflammation we are moving to an endoscopy. 

I just want my daughter to feel better, be able to not have to miss school , and be able to enjoy sports. We are always looking for a bathroom for Just In Case! 

Please Advise!!!!!!!!!!


----------



## Mehita

Hi Ali... sorry your daughter has gone through so much. Whether her test comes back positive or not, you may want to consider scopes with biopsies anyway. Obviously something is not right. What does the GI (it's been a GI, right?) say when you suggest IBD?


----------



## Tesscorm

Sorry you're having so many troubles finding a clear diagnosis for your daughter.  Hopefully the stool test will give some answers!  My understanding is that IBS does not cause inflammation so having a high CRP result does indicate that there is some other problem.  However, CRP is not limited to intestinal inflammation...  it could be inflammation anywhere in the body - the stool test will, hopefully, rule intestinal inflammation in or out.  I also don't believe stool samples are 100% conclusive... has she had an MRE (or other imaging tests) to 'see' if inflammation is present?


----------



## ali79shine

Soooooooo Stool came back with inflammation 

Waiting on Childrens to schedule both upper & lower scopes with biopsies.

Her symptoms are getting worse, its an everyday struggle now. I took her to a concert for her 16th birthday this past weekend and we were in the bathroom for like an hour off and on. This breaks my heart for her!!! 

Anyone have ideas for things to help that we can do at home? already staying away from fatty foods and dairy and trying hard to stay away from sugars and fructose per our DR. 

Sad for my baby to have to be going through this on a daily basis!


----------



## Mehita

So sorry, Ali. I'd just let her take it easy, stay home, let her rest. A lot of kids here have benefited from a liquid only diet called enteral nutrition. It can sometimes help reduce inflammation and be easy on the bowel. Short term until the scopes she can drink Ensure or Boost that you can find at the grocer or pharmacies. I'm sure others will be along with advice.


----------



## ali79shine

Mehita said:


> So sorry, Ali. I'd just let her take it easy, stay home, let her rest. A lot of kids here have benefited from a liquid only diet called enteral nutrition. It can sometimes help reduce inflammation and be easy on the bowel. Short term until the scopes she can drink Ensure or Boost that you can find at the grocer or pharmacies. I'm sure others will be along with advice.


Thank you Mehita! We will try those out. Rest is another story....she's on the soccer team, and can't miss practices or she will miss out on the games. She feels like she needs to be there. I'm all for her resting her body, but she's 16. LOL LOL 

Thanks again!


----------



## Tesscorm

Sorry she's struggling every day.   Rest would help but totally understand the teens/sports thing...  Make sure she stays well hydrated!  Also suggest Boost/Ensure to help boost her nutrition levels.  Do not take ibuprofens - can cause problems with crohns/UC (tylenol is okay).

I hope you get the scopes soon and get some answers.


----------



## ali79shine

Scopes with biopies scheduled for Sept 30th. Waiting is the worst part! 

She is nervous, I'm nervous. We just want to get this over with! I guess if the doctor sees something she will come talk to us. Does anyone have expierence with this? Will she be able to see what it is just by going in and looking? What else could it be besides Crohns or Colitis. No one wants to give me answers! UGH! I read IBS doesn't normally show inflammation in the colon. Do we have to wait for the biopsies for answers?

Scared and Confused!!:confused2:


----------



## ali79shine

HELP PLEASE!

My daughter is sick, having a flare, whatever you call it. We have no clue what she has yet. Her stomach cramps, hurts, cold sweats, feeling like throwing up, ends up with diarrhea. What can we take over the counter to help? This is a daily thing now, she just text me from school saying she hurts. And all I can do is say try and tough it out. My heart breaks, can only miss so much school and has scopes coming up and will need to be out for 2 days of school.

What can I do? I called and left messages for our nurse, waiting on a call back. Thought this might be faster!

Please advise!


----------



## Jmrogers4

So sorry ali79shine.  If she does have Crohn's some of the things we have found to help with symptoms is going to EN (entrenal nutrition) and you could use over the counter things like Boost, Ensure or even the junior ones Boost Kid Essential or Pediasure not the Pediasure sidekicks but the regular 240 calorie pediasure shakes.  None of them really taste fabulous but they are not that bad and they quickly get used to the taste.  Especially if you are like my son and I know when he is feeling bad and starts asking for them instead of eating.
Basically gives the bowel a rest as it doesn't have to work as hard especially if it is inflammed you can imagine food scraping along that (Sorry for the visual).
Heating pads provide some comfort, tylenol is generally okay as well.
We've used Immodium in an emergency (usually if we are traveling and it is bad) but always with the GI's permission and only when he has been so bad we were more concerned with dehydration.
I would definitely at this point at the very minimum get a health plan in place until scopes, explain what is happening with the nurse and that you have scopes scheduled that way maybe if she is feeling really bad at school and doesn't want to come home she could lay in nurses office for a little while with a heating Pad.


----------



## Clash

So sorry she is experiencing so much pain and symptoms. I would stay in contact with the GI as much as possible and ask to be put on the cancellation list. You could ask the GI nurse for something to help with nausea and vomiting such as Zofran.

There are a lot of kids that have done enteral nutrition, all liquid(formula) diet, to help ease symptoms. This could be boost or ensure, or even other formulas that semi-elemental to elemental. It would be something to discuss with the GI, it has good remission rates but that might be an issue with scopes for diagnosis coming up.

Hope she finds relief soon. My son used heating pads for pain and Tylenol(ibuprofen is a no-no with IBD). It is such a tough thing to watch them in pain and feel unable to take that away. Hugs and Support.


----------



## ali79shine

Thanks for the info!

We will try the liquids asap, and I have zofran at home I can make her take. I didn't realize Advil was bad for her. We will stop that also. 

Does this sound like Crohns? UGH! I wish we had these stupid scopes already. Its all I think about day in and day out! 6 years of this and its getting worse by the day! Can they tell what it is when they do the scopes or are we having to wait for biposies back? 

I daughter is also a HUGE STRESS case. she has panic attacks all the time, we should have probably told the DR about that as well. In reading it sounds like that can make things worse on her, if it's Crohns.

I'm so glad I found this forum! I appreciate the quick responses and just knowing I have support out there is a huge comfort!!:ghug:


----------



## Clash

Before starting the all liquid diet I would discuss it with the GI as it could affect her scopes and possibly prolong the diagnosis process. EEN(exclusive enteral nutrition) is used to induce remission and has rates as high as steroids. Some that have been on steroids prior to scopes find that the steroids have dampened the inflammation and therefore the test results are skewed.


----------



## Jmrogers4

I hate to say it, but it depends on what they see during scope. My son showed ulcerations throughout when he was diagnosed and GI said he was 98% certain it was Crohn's but wouldn't be verified until biopsies came back but that we were going to start treating as Crohn's ASAP.

Stress can certainly make things worse so for many (my son and husband included) anything that can reduce stress is a positive but then isn't it for all of us.  Whether it is Yoga, counseling, listening to music or whatever.  She will have to find something that works for her.

Thanks Clash, meant to type that about Ibuprofen being a no-no as well as aspirin.


----------



## CarolinAlaska

ali79shine said:


> My daughter is undiagnosed
> 
> 16yr female
> Currently has HS(Hidradenitis Suppurativa)
> Undiagnosed Bowel Disorder for 6 yrs
> 
> We have been back and forth and back and forth, everyone writes this off as IBS. Here's a pill and some zofran, take Imodium and you will be fine.
> 
> Well I'm sick of these answers, there is something wrong with my daughter! I took her to Childrens Hospital in Seattle last year and he basically ruled out a few things with blood work and said she has IBS.
> 
> I took her back 1 week ago due to more severe D and tummy pains. They ran more testing and did stool tests. Here's what we found so far:
> 
> NEG- Parasits
> NORMAL- Liver Enzymes
> NORMAL- for Celiac
> NORMAL- Allergey for foods
> LOW- Albumin
> HIGH- CRP Inflammatory
> 
> We are still waiting for the stool to come back that shows inflammation in the colon. If that show inflammation we are moving to an endoscopy.
> 
> I just want my daughter to feel better, be able to not have to miss school , and be able to enjoy sports. We are always looking for a bathroom for Just In Case!
> 
> Please Advise!!!!!!!!!!


It was the elevated CRP that helped move us along toward the right diagnosis.  Hopefully your daughter will get the scope one way or another if she has never had one.  It sounds like she needs it.  How is her weight?


----------



## CarolinAlaska

Maybe just getting off the ibuprofen will help a lot.  Does she have joint pains as well?  For my daughter gluten is a big trigger even though her celiac tests are neg.


----------



## ali79shine

Thanks Everyone!!! So I won't move on to the liquids yet. No call back from GI yet. We start a 3 day prep for her scope in 1 week. Miralax and a laxative pill at the same time. 

1st day normal diet, 2nd day cut all fiber, pastas, raw veggies, crunchy foods, etc, and 3nd day is liquids only, and all 3 days we take the Miralax and Laxative pills. Scopes on Monday Sept 30th.

She went home today, took Zofran and an anti-d medicine, felt some what better and went back to school. Food seems to trigger her flare ups. seems like everytime she eats she gets a flare and it's like the food just shoots outof her(sorry for the graphics)

She is slightly overweight, assuming due to the birth control pills she is on for her HS to regulate hormones to control those flare ups. She is very active and plays 2 sports Soccer & Golf. Lots of running and walking. She drinks more water than I've ever seen anyone drink, but she has done this for years. She loves water. She does not eat foods that you would think would have effects on her, but yet I guess that just depends on what the heck she actually has. Pretty sure it's not just IBS.


----------



## Mehita

Since you mentioned pain, if she starts to get dehydrated or the pain becomes unbearable, take her to the ER, preferably at a children's hospital if you can. The last thing you want is a ruptured bowel. A trip to the ER might get you faster scopes as well. Just go with your momma instinct. Better safe than sorry.

Re: scopes, be sure they take biopsy samples. They can see some things, but obviously not microscopic things. Biopsies can take up to a week for results depending on your clinic. And scopes cannot reach too far into the small intestine. Read up on MRE's and the pill cam. They might come up in discussion.

Keep us posted... *hugs*


----------



## ali79shine

Childrens Hospital called me with her 3 day bowel prep instructions. Good Grief!

Miralax 2 capfuls x 2 a day for 3 days
Biscodyl 1 pill twice daily for 3 days

Friday- Normal Diet
Saturday- Restrictions of bread, crackers, pastas, fiber, whole wheat, raw veggies, raw fruit, crunchy foods, nuts, seeds, popcorn
Sunday- Clear liquids only until 7pm- after 7pm only water, clear apple juice & 7-up

Scopes Monday morning at 6:30AM

So my questions........WHAT CAN SHE EAT ON SATURDAY? 

I was thinking:

applesauce
jello
pudding
yogurt


Any other suggestions? Sunday is gonna be so hard! Especially being in a hotel room. Lots of 7-up and Chicken Broth. LOL

Here we go, getting answers hopefully!


----------



## my little penguin

Saturday boost or ensure drinks


----------



## Tesscorm

^^^just what I was going to say.  You don't mention restrictions on proteins... can she have eggs, chicken, etc.?  The day before prep day (so, according to your schedule, on the Saturday), I gave my son Boost shakes, broth and a bit of chicken.


----------



## ali79shine

Tesscorm said:


> ^^^just what I was going to say.  You don't mention restrictions on proteins... can she have eggs, chicken, etc.?  The day before prep day (so, according to your schedule, on the Saturday), I gave my son Boost shakes, broth and a bit of chicken.


They didn't mention protein? hmmmmm Maybe I should call them?

Thanks


----------



## ali79shine

*****UPDATE*****

Had Endoscopy and Colonoscopy with biopsies yesterday.

All went well and my daughter did amazing! No tears, and stood strong the whole time. So proud of her!

Spoke with GI doc. She showed us pictures and did a little, very little explaining. 

She said there is "something" going on in her colon/large intestine. and everywhere else looked great. She has inflammation in her colon, but she could not determine if it was Crohn's or Colitis. She said it did not look like Crohn's but she also said normally she can go in and tell just by looking at it what it could be, however with my daughter she just could not tell. so the biposies are what we need to confirm what it could be. She did say that because of the location of the inflammation it follows more of the Colitis and not Crohn's.

I guess it's still a waiting game for us. Next appt is Oct 14th for results.

Thanks everyone!


----------



## Jmrogers4

Glad all went well.  Hate the waiting game..  Hope biopsies come back quickly and you can get a plan in place to get her feeling well quickly. Hugs!


----------



## ali79shine

Pathology comes back NORMAL! Now what, UGH!

Waiting for followup appt Oct 14th..........so far away!

:confused2:
Frustrated.Confused.WantAnswers.NoWhat


----------



## DustyKat

Do you have a copy of the report? If not get one so you can see exactly what it says, post it here and we will put our two cents worth too!  

Normal pathology could mean just that or it could be that certain characteristics are absent that would provide a definitive diagnosis. 

Looking at the her blood and stool results...has she had any imaging done of the small bowel? If not ask for that next. A scope leaves almost all of the small bowel untouched. Also request further bloods that cover B12, Iron Studies, Vitamin D, Magnesium and Zinc. These can also give clues if abnormal. 

Be sure and obtain copies of all test results. Also, if you aren't keeping a diary maybe think about starting one, it can help track symptoms and maybe help piece the puzzle together. Have a look at these suggestions we have in the wiki: 

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck with the follow up! 

Dusty. xxx


----------



## my little penguin

Also you can have her slides re read for a second opinion.
We have had that done with all of DS biopsy slides 
Just to be sure .
We have them sent to a major pediatric Ibd center .
They get read and we get the second report no appt needed .
Just call pathology at your current place and the other place .
Your could send them to chop Bch or cchmc.
These are the top three in the country .
Good luck


----------



## ali79shine

No copies of anything yet. I will get them at our appt Monday 10/14. I think that they would have seen into the small intestine because they did an endoscopy as well.

She is home again today from school. Stomach cramps, feels like vomitting and has "D". She also gets cold sweats during this time. Pain doesn't stop until she has voided all stool. 

We ate Fried Chicken last night. Could this be a gallbladder issue? 

She is getting depressed, stressed out from missing school. Not sure what to do or to tell her.


----------



## Jmrogers4

Endoscopy doesn't go very far into small - still a lot loft that is un-viewed.
Sorry she is still feeling so bad.  Hope you get solid answers soon


----------



## ali79shine

Just got off the phone with the doctor. She said everything is normal. Biopsies are good and the inflammation is what you would see in a patient that has normal diarrhea. 

She stated that my daughter is "FUNCTIONAL" what ever the hell that means.

They can't find anything wrong 

She wants her to continue on:
Probiotic
Levsin

And wants her to start:
Metamucil 

She wants her to also start counseling for anxiety. And the counselor will help her learn ways to deal like deep breathing or yoga. Really?? What 16yr old does Yoga or Deep Breathing? She also said that since we know what foods trigger flare ups to simply stay away from them.

This doctor has frustrated me and I'm moving on to another doctor. I've ordered all of her testing results and information. To take to the next doctor. There is something wrong and I don't believe she is "FUNCTIONAL" She is still missing school and in pain. 

:ybatty:


----------



## Mehita

I think you really need to check the small intestine. Like others have said, scopes cannot reach a good portion of the small intestine. Possibly an MRE or pill cam might be in order. 

Keep pushing, mom. No child should be in pain for extended periods of time. Something IS up and you just need to find someone who will help you.

Good luck!


----------



## ali79shine

Mehita said:


> I think you really need to check the small intestine. Like others have said, scopes cannot reach a good portion of the small intestine. Possibly an MRE or pill cam might be in order.
> 
> Keep pushing, mom. No child should be in pain for extended periods of time. Something IS up and you just need to find someone who will help you.
> 
> Good luck!


Thank you Thank you Thank you! I feel like I keep getting knocked down being told, she's normal. It's nice to hear someone else tell me to Keep On It! It's so hard to keep on it when you keep getting told, everything is fine. Thank you for this!


----------



## dannysmom

By "functional" the doctor may have meant she has a functional disorder. IBS is considered a functional disorder. We had one dr (@John Hopkins) use this term for us. This doctor said that with IBD you would see tissue damage but with functional disorders you will not. They attribute the symptoms for functional disorders to the nervous system (enteric nervous system) ... hence the recommendation for counseling. (We did not follow those orders.) Good luck!


----------



## ali79shine

Got my hands on her result paperwork. Waiting to see a secondary doctor. A few things I see from the report listed below:

BUN- Low 5
Albumin Level- Low 3.5
C Reactive Protein- High 1.2
White Blood Count- Low 4.0
Immature Granulocytes- High 0.3
Stool Calprotectin- High 165

Endoscopy- Midway to the transverse colon, there are areas of edema & erythema and friability.

Does this look like anything to anyone? LOL LOL I have no clue what these mean but they are the only things highlighted as being different.

Thanks


----------



## my little penguin

Edema and erthymea mean swollen and red.
Which can happen from Ibd or just plain old prep.
Have you had the biopsies read by another hospital ?
We have sent DS's out to cchmc more than once for a re read .
No visit needed just get a second set of eyes on the path slides or mre etc...
Makes DS 'a Gi and us feel better about med decisions etc.,.


----------



## ali79shine

my little penguin said:


> Edema and erthymea mean swollen and red.
> Which can happen from Ibd or just plain old prep.
> Have you had the biopsies read by another hospital ?
> We have sent DS's out to cchmc more than once for a re read .
> No visit needed just get a second set of eyes on the path slides or mre etc...
> Makes DS 'a Gi and us feel better about med decisions etc.,.


How do I get someone else to look at the pathology?


----------



## my little penguin

Call Bch chop or cchmc etc...Gi Ibd dept and ask for a second opinion.
You tell them you only want a records review of xyz .
We did all records and tests etc the first time.
You then contact the path dept at your current hospital and have the slides released /sent to the second place . Usually needs a medical release form and fill I. The name address etc of second opinOn place .

A few weeks later a report and insurance is billed


----------



## jane41042

New to this. Trying to find information. Daughter is 15 type 1 diabetic. Having severe joint issues and just some minor belly issues. Fecal calprotectin was 351 and CRP was 1.  The normal range is less than 1.EGD and Colonosopy only showed Chronic esophagitis. Nothing major. They want to repeat these levels in a month. She has had a wt loss of 25lbs since July. She never has diarrhea, she seems to be more constipation. Any ideas what this could be. She has had belly aches for years.  She quit complaining because she said they never could find anything and she was worried about our medical bills Her endo was sure it would be Crohn or celiac but the Gastro wouldn't give me any answers to that question until test are repeated in 30 days. In the mean time she is still having so many joint isues. Knees, hips, wrist, fingers and toes and she has this skin sensitivity to touch. For example if you use your finger and write a time it will turn white and stay there for 5-10 min. Looking for any ideas.  They started her on Diflucan 40mg for 21days.  We are going to Childrens Hospital in Cincinnati.  This past Saturday she slept for 16hours.  Got up and went back to sleep 2 hours later.  Everyday she comes home from school and sleeps for 2-3 hours.  Trying to balance her sugars and this have been a huge challenge.  Like I said looking for ideas.  I just wonder if it is Crohn's.


----------



## Catherine

Has she had any testing of the small bowel as a colonoscopy can only reach the start of the small bowel.   

Keeping looking for answers, my daughter also stopped complaining about stomach pain as the dr keeping saying gastro.


----------



## Momto2girls

Hi everyone -- long time, no post.  I am still around just lurking mostly. Gracie is 5.5 now and still a medical mystery. Things never really got "bad enough" to rescope her. Here are the results of her original scope in case you're curious: 

Esophagus:
NO DIAGNOSTIC ABNORMALITIES

Stomach Antrum:
MILD CHRONIC GASTRIRIS WITH FOCAL ACTIVITY AND RARE H. PYLORI

Duodenum:
NO DIAGNOSTIC ABNORMALITY

Terminal Ileum:
FOCAL ACUTE INFLAMMATION

Colon, designated as right:
MELANOSIS COLI

Colon, designated as left:
FOCAL CRYPTITIS AND MELANOSIS COLI

This was treated with sulfasalazine twice now, both times with improvements, and both times things eventually got worse again.

So she's worse again now primarily with abdominal pain. Everyday -- every meal. She's been tested for Celiac 3 times, all negative. She's not lactose intol (according to her scope), she's still gaining weight, though she's not gaining a lot of height.

And her attitude is that she's "fragile." Like, she melts down easily, she's tired acting a lot. 

I am thinking of starting over again -- asking for a fecal lactoferrin possibly? Last time is was negative. I need to go pick up those results in fact, but that had to have been 6 months ago?


----------



## my little penguin

You may want to ask for a fecal caloprotectin instead.
It gives a number versus a positive negative .
Much more useful


----------



## Momto2girls

I just remember from last time they said they don't do the cal protection. But it does sound a lot more helpful. Grr.


----------



## Mehita

What about just gluten intolerant? Not Celiac, just can't handle gluten?


----------



## Momto2girls

I do think she is probably gluten intol. But, I don't really think that's the whole story. For example, she'll have tummy aches when she wakes up in the morning. She'll have them when gluten-free, she has them in the middle of the night?


----------



## Momto2girls

Is there anything between Celiac and IBD? I'm sure there's a million things. I forgot to mention she has a low grade fever off and on.


----------



## Mehita

Maybe I missed it... how's her poop?


----------



## Momto2girls

Constipated. When she has D occasionally I usually think it is from a blockage. We've had blood but not recently.


----------



## jleades

I have been dealing with my daughter having chronic lower abdominal pain with chronic constipation and now mouth sores (looks like little red blisters on her tongue and inside of cheeks).  About two years ago she had the same mouth sores/blisters and then started having severe lower abdominal pain.  After being seen at the ER multiple times and being told that she is just constipated and needs to drink more fluids, eat more fiber...We were referred to Pediatric GI specialists, tested for celiac, crohn's, UC, had upper endoscopy, colonoscopy, CT scans, ultrasounds, all appeared normal and through treatment for the constipation, it seemed to be under control after about a year.  Then it started all over again about 3 months ago, but this time the pain is worse.  It seemed to be more specifically in the LRQ and she underwent all the tests to rule out her appendix, ovaries, obstruction...pretty much everything they thought it could be.  I was then told that it was a virus that needed to just "run its course".  3 months later with belly pain and a month and a half with mouth sores and we are still running with the "its just constipation".  The last GI we saw Dx'd with Slow Transit Colon IBS.  Rx for Amitiza and 17g Miralax daily.  Her bowel movements are now like loose oatmeal and she is still is a Level 6/7 pain constantly.  She has lost about 10+ lbs in the last month and small blister keep popping up on her tongue making it extremely difficult for her to eat or drink anything.  After I called a flipped out about her not improving, they schedule an MRI Entrography which I was told was normal, but showed impaction. The last time my daughter went to the hospital BEFORE starting the medication prescribed she had a complete bowel clean out (x-ray after showed empty bowels).  Since then she has been unable to eat much of anything that is not soft and easily just swallowed like applesauce, oatmeal, Boost drinks.  Many times I have to force her to finish a single serve pre-packaged applesauce.  We supplement with the Boost drinks to help keep her calorie intake up.  I asked them how she could be impacted when she is eating so little and her BMs are already so loose?  The response was..."I don't know...here's our plan of action, increase Miralax to 
24g daily continue Amitiza, follow the enclosed directions for a bowel clean out for 3 days and get an X-Ray afterwards to see if impaction cleared."  REALLY!!  Increase the Miralax?  She is already having very loose BMs, there is no clear diagnosis on the sores in her mouth, which we have seen her pediatrician and been referred to an Infectious Disease specialist (who thinks its GI related not infectious), she is still in extreme pain.  I spent the majority of last night with her sleeping curled around me.  She would tense, moan/groan/whimper and squeeze me in her sleep.  My gut is telling me that I need to push harder, that there is something going on that they are not seeing or finding.  

I haven't mentioned that she is a high level competitive gymnast who has been fighting her way back into the gym through all of this.  Because of this the doctors are telling me to take her to a psychologist, it is probably stress induced and I needed to "Realize when it was time to stop searching and find someone who could help her DEAL with the pain."  

I am at my wits end!  Where do I go from here?  She is a 12 yr old girl whose life is completely disrupted and she is in constant pain and feels like the doctors are giving up on her and taking the easy way out.  She thinks they think she is crazy or mental.  Before this all happened she was happier than she had been in a long time...the gym was going great, she started a new school and was making more friends than she has in previous years.   Even she has said how great things were until it all started again.  Any advice would be welcome.


----------



## Clash

I'm so sorry to hear of all your daughter is going through. The weight loss would concern me as well and I would still be insistent on pushing for answers.

I know there are children's hospitals that are well known for their pediatric GI centers. I think Cincinnati Children's Hospital Medical Center, Boston's Children Hospital and the Children's Hospital of Philadelphia are supposed to be the best. I know there are some parents that have sent for record reviews at other hospitals and still others that went for their second opinion at these places.

I do hope you are able to find some relief and answers soon for your daughter.


----------



## my little penguin

Also try rhuemo for possible bechets.
mouth sores and go issues that disappear and reappear can be behcets.

http://behcets.org.uk

fwiw my son has constipation as part of his crohn's and when he is flaring we need to increase the miralax does to 1 and 1/2 cap fuels as well. when he is good 1/2 a capful.
if there is impaction then loose still can "leak" around the older hard stool so it is possible
which is why the X-ray would be needed.
DS became completely FOS(full of stool) in less than a week before so it can happen.

have you tried  a semi elemental formula such as peptide or peptamen jr ?
might help a little more than boost since its easier on the digestive tract.

also keep in mind formula can be very very constipating for some kids or have the opposite effect for other kids it depends so that may be playing a factor in the vicious cycle.

kiddo is constipated- eats less- drinks more formula so more constipated
give more miralax which causes more cramping so kiddo eats less so give more formula

see the cycle
we have btdt many times with DS.


----------



## dannysmom

Hi Jleades and welcome. Sorry your daughter is suffering so much. My son was about your daughters age when he started to feel very ill. We had a doctor question if 'school phobia' was causing his symptoms. (I knew it was not.) We went to a psychiatrist for his opinion and got a letter saying that he did not believe there was ay psychiatric cause for the illness. I hope you can get answers. Have your tried getting another GI opinion? Have you tried any other diets or have you done allergy testing? My older son is fructose intolerant (so no apples for him) as well as lactose intolerant.


----------



## holly and charlie

Hi There, I am new to this group, I have crohns myself and have a family history of it, my mum my nan and my granddad had colits.. Anway I have a 9 month old son who has recurrent constipation and has been waking up screaming in pain at night and is very windy. So I am worried this is the start of crohns..(he had blood on 2 occasions a few months ago too) 

I was wondering if anyone could share their experiences and what symptoms I should look out for?
xx


----------



## dannysmom

Hi Holly and Charlie - I really do not know what to look our for in an infant. I am sorry your baby is in pain. I hope you get some support here ... you may want to start a new thread in the Parents of Kids with IBD.  Sometimes postings can get 'lost' in the Undiagnosed Kids thread. Good luck!


----------



## Sickboy11

Sickboy11 said:


> So after seeing the GI dr again and he is unsure what is happening as my son as he putting on weight but has flares of diarrhea up to 7 times in a day. He is suspecting irritable bowel but is concerned of the b12 deficiency and even after injections it is not stabilising and goes back down. He said to try Metamucil and see if that helps with bulking the stool and hope won't cause constipation. He also said he might rescope him in September when we see him again. He can't do the capsule camera as in Australia he needs to be anaemic to qualify.
> So we are stuck again and not knowing what is wrong. How can a child keep surviving doing this many diarrheas in one day and become dehydrated. My heart goes out to any kid that has to live with this lifestyle.
> Does intermittent diarrhea like every 3 days once or twice and then three or four days of worse diarrhea sound familiar or could it be irritable bowel?








Ok so we are still dealing with diarrhea prob now up to five times a day on good days and some days with none.


Dairy soy free and have done fodmap with no success. 

I rang the GI and with it now going on nearly two years he has suggested we do capsule endoscopy although we will have to pay for it. Maybe proctitis hasn't cleared up. 

Has anyone had the capsule endoscopy at randwick and was is done privately through prince of wales or at the children's hospital? If privately did your health fund cover it ?
No child should have to deal with this- over 40 days off this year from school. 

Thanks


----------



## DustyKat

Hi Sickboy11, 

I’m so sorry to hear things are still unresolved for your lad.  

I haven’t really dealt with POWH but normally if a service is offered at a public hospital it is covered by medicare. 

I know upsetmom has been there but not sure if her daughter has had a pill cam.

Are you on fb? If so there is a group that is for Parents of Aussie Kids with IBD. Most members are from the east coast and NSW and I know there are members there that have children that go to Sydney Children’s Hospital…

https://www.facebook.com/groups/Parentsofaussieibdkids/

Dusty. xxx


----------



## Sickboy11

Thanks Dustykat,

He is actually getting it done tomorrow in the dr rooms. The receptionist made a mistake and booked him in to POW by mistake to have an endoscopy. So now it is on tomorrow. I will let you all know if they find anything. I don't think they will but as a mum I have to do everything in my power to rule out anything serious since there was proctitis and evidence of inflammation of the colon. It is $2000 without any rebate. His allergy specialist also took a lot of blood earlier in the week with some really interesting names and some genetic ones as well, just to rule out everything.

Going to be a long day with lots of travelling but it only needs to be done once and there are a lot sicker kids than him, but missing out on so much school needs to stop if we can.

thanks again


----------



## DustyKat

Good luck! 

I hope the day goes well for you all and you soon find solid answers as to what is ailing your son. :hug: 

Dusty. xxx


----------



## upsetmom

Good luck!


----------



## michelle222

Hi everyone,

I'm a member of this forum and am a 28 year old struggling to get my crohns under control. However, I'm posting about my nephew who is 4 years old and cannot seem to get any sort of diagnosis. He is consistently having stomach pain and very loose diaherrea. This started in earlSeptember. At that time he was also having a fever regularly. After all kinds of testing, his blood tests showed inflammation consistent with crohns. Then when they gave him the colonoscopy and endoscopy it looked fine.....

All his symptoms have persisted though and his blood tests are still elevated. Could it be crohns without the ulcerations? Or am I paranoid because of my disease? I just hate that he's in pain and that no one knows whats wrong.....


----------



## Farmwife

Hi michelle,
So sorry to hear about your nephew. Poor little guy.
Here's a few questions.
 Did they take biopsies'?
Did he have any kind of stool test? What were the names?
What possibilities have been thrown out there?

My Grace is 4 also. I've learn that sometimes the disease at the very beginning of on-set can be hard to diagnose. As time goes by the symptoms or "proof" comes forward. The important thing is to make sure he has a GI that is still looking and helping to get to the bottom of things. 

HUGS


----------



## my little penguin

Hugs
My son has crohn's and dud not have signs of ulceration a on his first scope two years ago.
He did have granulomas and other inflammation on his biopsy slides .
Has he seen a Rheumo ?
They might be able to help if its not Gi causing the main issue


----------



## Naturelover

jleades said:


> I have been dealing with my daughter having chronic lower abdominal pain with chronic constipation and now mouth sores (looks like little red blisters on her tongue and inside of cheeks).  About two years ago she had the same mouth sores/blisters and then started having severe lower abdominal pain.  After being seen at the ER multiple times and being told that she is just constipated and needs to drink more fluids, eat more fiber...We were referred to Pediatric GI specialists, tested for celiac, crohn's, UC, had upper endoscopy, colonoscopy, CT scans, ultrasounds, all appeared normal and through treatment for the constipation, it seemed to be under control after about a year.  Then it started all over again about 3 months ago, but this time the pain is worse.  It seemed to be more specifically in the LRQ and she underwent all the tests to rule out her appendix, ovaries, obstruction...pretty much everything they thought it could be.  I was then told that it was a virus that needed to just "run its course".  3 months later with belly pain and a month and a half with mouth sores and we are still running with the "its just constipation".  The last GI we saw Dx'd with Slow Transit Colon IBS.  Rx for Amitiza and 17g Miralax daily.  Her bowel movements are now like loose oatmeal and she is still is a Level 6/7 pain constantly.  She has lost about 10+ lbs in the last month and small blister keep popping up on her tongue making it extremely difficult for her to eat or drink anything.  After I called a flipped out about her not improving, they schedule an MRI Entrography which I was told was normal, but showed impaction. The last time my daughter went to the hospital BEFORE starting the medication prescribed she had a complete bowel clean out (x-ray after showed empty bowels).  Since then she has been unable to eat much of anything that is not soft and easily just swallowed like applesauce, oatmeal, Boost drinks.  Many times I have to force her to finish a single serve pre-packaged applesauce.  We supplement with the Boost drinks to help keep her calorie intake up.  I asked them how she could be impacted when she is eating so little and her BMs are already so loose?  The response was..."I don't know...here's our plan of action, increase Miralax to
> 24g daily continue Amitiza, follow the enclosed directions for a bowel clean out for 3 days and get an X-Ray afterwards to see if impaction cleared."  REALLY!!  Increase the Miralax?  She is already having very loose BMs, there is no clear diagnosis on the sores in her mouth, which we have seen her pediatrician and been referred to an Infectious Disease specialist (who thinks its GI related not infectious), she is still in extreme pain.  I spent the majority of last night with her sleeping curled around me.  She would tense, moan/groan/whimper and squeeze me in her sleep.  My gut is telling me that I need to push harder, that there is something going on that they are not seeing or finding.
> 
> I haven't mentioned that she is a high level competitive gymnast who has been fighting her way back into the gym through all of this.  Because of this the doctors are telling me to take her to a psychologist, it is probably stress induced and I needed to "Realize when it was time to stop searching and find someone who could help her DEAL with the pain."
> 
> I am at my wits end!  Where do I go from here?  She is a 12 yr old girl whose life is completely disrupted and she is in constant pain and feels like the doctors are giving up on her and taking the easy way out.  She thinks they think she is crazy or mental.  Before this all happened she was happier than she had been in a long time...the gym was going great, she started a new school and was making more friends than she has in previous years.   Even she has said how great things were until it all started again.  Any advice would be welcome.


Has a Sitzmarker study or a motility study been done? If she was dx with with a motility issue than what could be happening is that she is forming some hard stools that are not moving through her system and causing back up but the miralax is allowing some very soft stool to pass around the hard stools. She may need to reduce the Miralax and use a laxative. Notice I said reduce the Miralax not stop it. The laxative would increase gut muscle contractions thereby helping to push the firmer stool along the bowel tract. Is the loose stool very acidic and causeing her a sore bum?

When a motility study is done with the wires inside the gut, the docs can try various meds to see which ones work on the specific areas of the gut that are not functioning correctly.


----------



## michelle222

Thank you Farmwife and Penguin for your replies. 

I guess in his endoscopy/colonoscopy everything looked fine, I don't think they took biopsies. His blood tests still show inflammation and he is still having diarrhea and stomach aches every day. I'm not sure if he has had stool tests. He saw a Rheumatologist who said that he didn't seem to have arthritis or anything like that. The GI doctors were almost 100% sure it was Crohn's until they did the colonoscopy and everything looked fine. That being said it's been almost 4 months of these symptoms and nothing is getting better. 

Today they did a pill cam, so I guess they are thinking it's possible that he has Crohn's in the small bowel that they couldn't see in the endoscopy or colonoscopy. It's really tough to see a 4 year old going through all of this. On the one hand I hope he doesn't have Crohn's because I know how awful it is, but it's almost worse not knowing what's wrong. Anything suggestions as to what other tests should be happening? How were your kids diagnosed?


----------



## my little penguin

DS's first scope looked absolutely normal- so much so we were told he had a food intolerance or something else ...a week later biopsy results back and dx of crohn's.


----------



## Naturelover

michelle222 said:


> I guess in his endoscopy/colonoscopy everything looked fine, I don't think they took biopsies. His blood tests still show inflammation and he is still having diarrhea and stomach aches every day. I'm not sure if he has had stool tests.


Have you asked the doc if he took biopsies? Doesn't make sense not to but I do know some GI surgeons will only take them if they see something with the scope. My surgeon wasn't origally going to take biopsies but I pushed him on it. When I got to the hospital for the colonoscopy, the doc examined me and then added on the endoscopy. He did biopsies of both procedures but only saw something in the colon.

You can have inflamation in the GI tract but not necessarily see it with the scope. It's microscopic inflamation that can only be seen using a microscope. My son's GI inflamation was picked up using biopsies when he was little.

Do you get copies of all reports?

You probably already do this, but thought I'd mention it anyway, make a list of questions, symptoms etc before you go into the doc's office. I make a copy for my doc and one for me so we can go right down the list. It also helps the doc when they write their notes. They can get more details down.

I have several ongoing documents that I update after procedures, surgeries etc. and the results. I have a list of meds, allergies, doctors & pharmacy names, phone number and fax numbers.

Hope this helps some.

I hope things get better soon.

Blessings,
Naturelover


----------



## Suzysu

Does anyone have experience of Metronidazole?
Freddy has had a two week course of MNZ followed by eight weeks of special probiotic from the hospital. He went from explosive diarrhoea and pain before we started MNZ to totally NORMAL poo for a whole two weeks (first time ever in his little life!!)while he was taking the MNZ, but now we have stopped the MNZ and started the probiotic his stools are gradually becoming looser again. Just not sure if it is significant or not - ie important enough to call and tell the GI or just carry on and see what happens - he is no worse than he was before he started the MNZ, next GI app not due till June.
And any advice regarding accidents (I thought things would improve when his poo improved but it didn't sadly) and how to help him realise better when he needs to go etc are greatly appreciated - I am at the end of my tether with this side of things!
Thank you in advance!


----------



## DustyKat

Matt was on Metronidazole (Flagyl) for 6 months. 

It is one of the two antibiotics used when someone presents with a flare as it has both antibiotic and anti-inflammatory qualities. The theory for the use of antibiotics is, when the bowel becomes inflamed with IBD it loses it protective barrier, so to speak, so the wall becomes breached. Breach the wall and infection sets in. 

When you think about the GI tract it is the one of the main areas of the body that isn’t sterile. We put non sterile food into our mouths and down the GI tract it travels. What protects our otherwise ‘sterile’ body from it? the lining of the bowel, mucous membrane. The problem with inflammation is it causes swelling and lesions to form which in turn breaks the mucous membrane which then allows the bacteria from the gut to get deeper into the bowel wall and set up an infective process. That is why most doctors will work under the assumption that a flare not only equals inflammation but infection too. 

I think it would be worth contacting the GI and letting him know the positive outcome Freddy had whilst taking the Metronidazole. Who knows, it may just help put a piece in the puzzle.  

Not sure about the accidents. If urgency is the problem I don’t know how you will overcome that but do you have access to a continence nurse? I would imagine they could be a very useful resource for you. 

Good luck Suzy! :ghug:

Dusty. xxx


----------



## Suzysu

Thanks so much dusty, that all makes sense and is very helpful. 
No one has mentioned a continence nurse so maybe we don't have one although he can have the odd day without an accident so I am hoping its just a case of time and helping him understand when he needs to go.


----------



## Tesscorm

Flagyl also helped my son tremendously!!!  When he was admitted, he was started on IV flagyl for one week.  During that week, with nexium (antacid being the only other med), his CRP went from 140 to 3.6!  I believe that long term use is not common as it has it's side effects as well but... :ybatty:  When S's GI wanted to start remicade because of inflammation shown in MRI, I did ask if we couldn't do a round of flagyl to reduce inflammation first before starting remicade (as there is a risk that remi can promote scarring) but the GI said no.  He didn't really give a reason (or, at least, not one I remember)???


----------



## DustyKat

There would continence nurses/advisors in your area health service. I dare say the majority would deal with the adult population but there would very likely be paediatric ones attached to children’s hospitals. 



> Continence clinics
> 
> In the UK, there are over 360 NHS continence clinics, with specialist teams providing support and medical advice for people with bowel or bladder incontinence. "If you prefer not to see your GP, these are an excellent alternative first stop for diagnosis and treatment," says Logan. "We can significantly improve life for 75-80% of the people who come to us with incontinence problems.”
> 
> Continence clinics can be based in a hospital or in the community, often attached to a health centre. You don’t need to be referred by your GP and you can phone them directly to make an appointment. On your first visit, a continence adviser, usually a nurse who specialises in bowel and bladder problems, will assess you and explain your incontinence treatment options.
> 
> Continence advisers, and the incontinence physiotherapists who work alongside them, are particularly good at teaching pelvic floor exercises to women with stress incontinence (sudden leaks) and bladder training to women with urge incontinence (regular urges to use the toilet). They can also issue pelvic-floor-strengthening devices, such as vaginal cones, and continence pads and products, as well as explaining how to use them.
> 
> To find details of your local NHS continence clinic:
> Call the Bladder and Bowel Foundation (B&BF) confidential helpline on 0845 345 0165, or use the continence clinic directory on the B&BF website (you have to register to use this online facility).
> Call your local hospital for details of your nearest clinic.
> 
> http://www.nhs.uk/Livewell/incontinence/Pages/Gettinghelp.aspx


Again, I would think these clinics are likely targeting the adult population but I would ring and have them give you contact details for a paediatric service. These sort of resources can be invaluable and since it what these nurses deal with day in and day out they will have advice and tips for you. 

Dusty. xxx


----------



## Suzysu

Thanks again! That really is so helpful - I honestly had no idea we had clinics like that!

  I did call the gastro nurse today as Freddy's pre-school said he was in a lot of pain and had diarrhoea again, then at home he was crying because his bottom hurt and then he had an accident. The nurse was really lovely and said she didn't think Freddy should wait till June for his next appointment, and that she would email the consultant to see if Freddy would need a Dr or a nurse appointment, if I speak to her again I will ask about the continence clinics - and if not I will call them directly.

Thanks so much xx


----------



## treay

Hi, I am a mom to 9yr old boy who started off having low back pain last October and also had canker sores in his mouth that entire month. We figured the back pain was due to hockey, however the back pain soon spread down his legs into his thighs, knees, ankles and then was accompanied by fevers between 99.6 and 102.1 pretty much every night since the beginning of November. He has drenching nights sweats, loss of appetite and really bad back  and stomach pain. He had an episode of bloody diarrhea four years ago that lasted approx 10 days and has never had issues since. He would get constipated a couple of times a year but it would go away. He has lost 9 lbs off his tiny little frame and is so very pale. He is scheduled for an endoscopy/colonoscopy tomorrow. i'm a bit worried though as he had a dose of pico salax this am followed by another dose at 4 pm and no bowel movement at all. he threw up bile after his second dose as he dolesn't have much of an appetite and had not eaten anything since yesterday afternoon-and only liquids todayI'm worried they may reschedule his scopes. The dr.'s have donee MRI/MRI-E/ultrasound/ekg/barium xray,and he has increasing CRP/ESR markers, a cluster of nodules where the jejunum meets the ileum, slightly swollen lymph nodes in his stomach. Anyone out there with similar symtoms?


----------



## Farmwife

Treaty welcome to the forum. Sorry you had to find your way here.
Your poor kid. I'm glad they there going to scope him. Definitely not right what this boy is going through. Please keep us updated.


----------



## Jmrogers4

Welcome Treay,
Hope they were able to do the scopes today and you got some answers.  Post when you can.


----------



## treay

Aiden's scopes went well and his GI has pretty much diagnosed him with CD -just waiting for confirmation from pathology which will take 1-2 weeks...I am just so relieved that we're moving towards a diagnosis and can focus on getting him better. I am so thankful to have found this site as well. Everyone seems so compassionate and it's just so nice to be able to get advice and share info. Thanks for being here and your responses.


----------



## Jmrogers4

Oh treay sorry you are joining the club but as you say at least you have an answer and can start working on getting your little guy feeling better.  I remember that feeling after scopes when GI says 99% Crohn's but we just need biopsies to confirm and thinking okay now lets get the treatment going.  I was unfortunately lucky in that my hubby has crohn's so I had an idea of what we were dealing with.
Have they started him on any treatment?  We went home from scopes with an rx for prednisone and started on Imuran when biopsies confirmed Crohn's


----------



## treay

No-they haven't started him on anything which is a little frustrating as he still has fevers/nights sweats/pain and now I also keep thinking of the pictures we were shown today of the ulcers along his intestines which makes it even harder to wait for treatment as I now see what's causing his pain and so badly want to fix it-but I can understand that they need to confirm the diagnosis. She mentioned nutritional therapy as an alternative to steroid treatment but is leaving the decision up to us once we've been informed of the pros and cons of each. I was able to find some info on the enteral therapy on this site as well as other diet info and possible trigger foods so I can at least start with that. Again-this is an amazingly supportive site and so thankful to have come across it.


----------



## Jmrogers4

Wish we would have been given the opportunity for EN at diagnosis.  We have done it in the past year as Jack absolutely refused to go on prednisone again.  He could not stand the side effects. You obviously have to decide what works for you and your boy but you are right that there is a lot of information on here and plenty to answer questions.  Keep us updated I would suggest you keep copies of everything.
:ghug:  Lots of hugs as you start on this journey.


----------



## treay

Thanks-I am already leaning towards EN as I've heard about the possible side effects of the medications on the kids... but I'm also wanting to see improvement sooner than later with Aiden's symptoms. Did you find the EN had the same results as the meds? and if so, how long was it until you noticed the symptoms were improving on EN? Thank you again for your replies :smile:


----------



## Jmrogers4

We actually noticed a decrease in symptoms in just a few days the pain went away, maybe because the intestines didn't have much work to do.  One thing to consider if you are leaning towards EN anyway is there have been a couple on here who have tried EN at first and it wasn't enough and they needed to add pred in but I think they would say that were glad that they tried it.  So I guess I'm saying I personally would try the EN you should hopefully know pretty quickly if it is helping as you should see a decrease in symptoms.  Never an easy decision.  Pred is the med we all have a love/hate relationship with.  It works quickly but the side effects are not fun


----------



## Suzysu

Hi treay, sorry your boy is going through so much, hopefully the scopes will get some answers and he can get some meds that will help him feel better, wishing you guys lots of luck and sending lots of hugs.


----------



## my little penguin

We tried EEN at first with 6-mp rather than pred plus 6-mp.
His sed rate went down but he still had symptoms after 9 weeks of EEN we add pred.
Sorry you have to join the group


----------



## mummy2gastricboy

My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.he has also had pain in arms and legs for over 2 year

Can anyone shed some light please
I have posted this same post in a few places for ideas
please help x


----------



## Cat26

Hi I'm new here looking for advice for my daughter. She is 16 is Type 1 Diabetic and became ill almost 5 years ago and was diagnosed with chronic fatigue syndrome/ME. She has had tummy problems for years but things have got a lot worse in last 3 years. She had an endoscopy a year past December and they found severe chronic gastritis - she had a calprotectin level of 133. They didn't do endscopy as felt no need. Things have been worse with nausea, vomiting, constipation etc. Been hitting my head over a brick wall and her gastro was off ill and no one else would look at what was going on - they blamed her CFS. Anyway gastro is back I got her seen urgent and they re did some tests. Her ESR is slightly raised, her albumin a bit lower, she is totally iron deficient now and her calprotectin level is now 400. The are doing a endoscopy and colonoscopy on the 27/28 of this month but am panicking as everything I read about calprotectin is to do with IBD. They don't think its coeliac as her blood test came back negative again. She has been so ill for the last five years and feel like no one has been listening to us. She has had so much tummy pain etc but because she doesn't complain it was put down to IBS. Any advice ?


----------



## Jmrogers4

Welcome Cat26,
I'm glad they are doing further testing and hope you get answers quickly.  The raised ESR, FC and anemia can certainly point to IBD but colonoscopies along with biopsies taken during the procedure should hopefully give you a definite answer.  Scopes will not be able to see small intestine however so if scopes do not give you an answer I would request an MRE or a pill cam.  Good news is if she does have IBD you can get her on a treatment plan that will hopefully have her improving quickly and symptoms gone.  Fingers  crossed for you on the scopes.  Please keep us posted.


----------



## dannysmom

Welcome cat. I am glad you have some tests scheduled ... surely hope they can figure something out so they can treat your daughter.


----------



## Cat26

Thanks for the replies.  Feel so unsure at the moment.  She has had a terrible couple of weeks, feels sick eating, becomes bloated and reflux been terrible.  So much pain and so pale.  The iron tablets are helping as she is not short of breath any more (iron was really low).  Hate this waiting game for the tests.  They have said they might have a cancellation this week so she could get in Thurs/Fri for tests if not its next week as organised.   So scared for her so has put up with so much over the years and I know she is worried herself I am just trying to stay positive.  Just need some answers this time.  I get so angry at times as she has gone downhill this last year with tummy and her endoscopy was meant to have been repeated before xmas but her Gastro was off long term sick and no one else would deal with her.  We got passed over each time I phoned and eventually saw a locum who said she only had "functional dyspepsia" even though he didn't have her notes etc.  Refused any tests at all.  Feels like everything has been a fight!


----------



## concernedfostermom

Hello. I am new here and looking for some advice/ opinions.

My foster daughter is now 20 years old and has been suffering with recurrent nausea and vomitting for years (she thinks since grade 9). These episodes occur every month or two with no particular pattern, sometimes triggered by an event (happy or stressful). The vomitting is frequent- a few times per hour- for 6- 12 hours, then she is unable to eat or drink much for the next few days until the episode passes. Oral gravol is not tolerated, sometimes suppository gravol helps.
The last few months, she has had a couple of bouts of "canker sores" in her mouth and on her outer genitalia. She has been tested for every STD they can think of, and all are negative.
This most recent "flare-up?" started with nausea, then diarrhea with blood in her stools, then vomitting with abdominal pain, especially in the RLQ.  
Seen in Emerg, bloodwork and pelvic exam done, and referred for ultrasound and to a Gastroenterologist.
The next day she had another bout of the canker-like sores in her mouth and on her vulva. The ones "down below" are apparently very painful. She has an appt with her GP today to get these checked again. 
She has lost 8 lbs in 4 days. She normally has a very good appetite and is unable to keep anything down.
Has a history of an appendectomy- Emerg Dr mentioned the other day that the surgical note said the the appendix was normal when they removed it. (had looked bad on CT scan) Also had a bowel obstruction during that same hospitalization which resolved with meds.
She has been tested for H Pylori which was negative. GP is planning to have her tested for allergies.

Does this sound like Crohn's? or something else? What other tests/ specialists should we be requesting? Any advice is appeciated.
Thank you.


----------



## my little penguin

Have they looked at bechets?
they typically has ulcers in the mouth and genitals.

see here:
http://www.mayoclinic.org/diseases-conditions/behcets-disease/basics/symptoms/con-20027549

It can also mimic crohn's
BTW


----------



## Cat26

My daughter had her endoscopy and colonoscopy on Friday but apart from some gastritis still lingering they couldn't see anything else.  Have taken biopsies which will take around 3 weeks to come back.  They are going to book her in for an MRI of the small bowel and then a capsule endoscopy to rule out any problems in the small bowel.  They checked her ESR level and it is still slightly raised and her calprotectin level is still 400.  The gastritis is less than when the diagnosed her with it over a year again when they said it was severe chronic gastritis but at that time her calprotectin level was only 133. So here I am sitting puzzling if there was nothing much to see why is her ESR raised and why does she have a calprotectin level of 400!  She was in so much pain after procedures she had to stay an extra night as she was so sick and tummy burning and in pain.  Just wanted some answers and still don't have any


----------



## Jmrogers4

There are a couple of children on here diagnosed with biopsies.  Scope looks clean but biopsies come back with microscopic inflammation.  Glad they are following up with more tests to rule out other areas.  Hope it all gets done quickly and gives you some answers and your daughter feeling better.
We've never done the pill cam as the MRE gave us the answer that there was inflammation in the small intestine.  My son's Calprotectin level at that time was 395.


----------



## Catherine

I have severe chronic gastritis it usually doesn't cause an increase in calprotectin.

My daughter has Crohn's.   Good luck with the further testing.


----------



## Cat26

Thank you so much for replying I thought I was going out of my mind and imagining things that weren't there.  They were so off hand about results as if we had wasted their time but then my husband said to me why are they doing other tests if they think everything was "fine".   I also don't get if everything looks fine why her ESR is raised, she became totally iron deficient (now back up thanks to a months course of iron), her albumin was low, and her calprotectin is 400.  No explanation as to why this could be just that every looked "pretty normal".   Coeliac blood test before scope was normal also.  She has been in so much pain since coming back from theatre.  Other kids had endoscopy etc and they were ok.  Katie's tummy was burning and twisting/stabbing and she was so sick.  Looked dreadful.  We have had such a long journey with her diabetes, then chronic fatigue and now all these problems with her tummy.  She has lost 5 years of her teenage life due to all her health problems.  Can only attend school part time and is wiped out even talking to someone!   Catherine thank you for letting me know you don't have an increase in calprotectin with gastritis.  They blamed the increase on gastritis last time and wouldn't do a colonoscopy.  Fed up with waiting for answers.  Still waiting on results of a MRI she had on her knee 2 weeks ago and full connective tissue bloods still to come back.  As Katie says all she wants is to know what is wrong then she can deal with it.  This waiting and not knowing and them blaming everything on her chronic fatigue is driving us up the wall.  They ignored all her vomiting for almost a year and blamed her chronic fatigue and then were really surprised to find severe chronic gastritis and said oh my she must have been in a lot of pain!!!!!!!  Do I sound slightly frustrated lol !  She has coped with her T1 Diabetes for 10 years and as she says just tell me what I am dealing with and I will get on with it.


----------



## DanceMom

My daughter has had 5 scopes and after the 4th she was miserable.  Pretty much the same burning/stabbing you describe.  It ended up being terrible gas which is pretty common after scopes.  The more I got her to move (which wasn't easy since she felt awful), the more gas she passed and the better she felt.


----------



## Cat26

The other thing that slightly worried me was how long the bowel prep took to work.  She had sennakot at 6pm then her first dose of piccolax at 10pm.  She didn't "go" until 1.40am on and off all night.  They gave her her second dose at 10am and by 12.50pm she still hadn't been so they had to quickly give her an enema because she was going to theatre at 1.30pm.   I have had to take piccolax before and it worked really quickly so don't understand why it took so long with Katie?


----------



## MrsMommy

This looks like the right place to post things.  
I have two teens, an 18yo girl & a 16yo boy.  This is about my 16yo.  He has been sick for almost two months.  Having R side abdominal pain (w/ R side shoulder pain), mild nausea, loss of appetite, weight loss, fatigue, chest pain, weakness, joint pain, and muscle aches.  No vomiting, no diarrhea.  He is eating a bit each day but it causes pain.  He is having some trouble with food sticking in his throat as well.  I have watched him go from a busy, active, fun loving 16yo to a pale, thin, tired kid.  He has had an ultrasound (normal), a HIDA scan (gall bladder is normal), bloodwork (normal), and an MRI (normal but showed signs of mild starvation).  He will be having an endoscopy (on Monday 4/14) and the doctor will be putting in an NG tube as well.  He will have this in for several days to a week.  Doctor is still looking at the possibility of Crohn's.  Right now the Dx is Visceral Hypersensitivity with possible IBS.  

DS will be staying overnight at the hospital and coming home with the NG tube.  I am hoping to get some info on what to expect.  How to make him comfy.  Do I need to get anything special for him?  I know a home health care person will be coming to get things set up.  Are there things I should ask that he/she may not share?  Any tips from those that have children with an NG tube.  I realize that this is a short time that DS will have this in but I am feeling rather nervous and helpless.  Thank you!


----------



## Jmrogers4

Welcom MrsMommy, 
Hope the scopes went well yesterday and you will be heading home soon.  Please check out this thread as it deals with EEN http://www.crohnsforum.com/showthread.php?p=694576#post694576.  My son did not have the NG tube but drank the formula but there are lots of kids who have had the NG tube.  Clash's son has one now and is just a few weeks into it so lots of information in the thread on her son and tesscorms son was on it for a long time.  They both put the tube in and take it out every night.  You can also start a new thread for any specific question you have about the NG as well.


----------



## Tesscorm

Hi MrsMommy, my son was 16 when diagnosed with crohns.  He did use enteral nutrition (formula feeds) through an NG tube and found it relatively easy to do.  He was taught how to insert the tube while at the hospital (a nurse inserted in the first time and then talked him through it the next couple of times) and then he came home.  He inserted the tube each evening and removed it in the morning.  While we may have been nervous about it the first few evenings, he really didn't have much trouble with it.  He did find the sensation of the tube in his throat to be a bit annoyng (not painful) but became accustomed to it fairly quickly.  He also found the noise of the pump annoying but, it is a rhythmic sound and, again, he became accustomed to it.  Although, to help alleviate that problem, I did put the 'pump' into his nightstand drawer and drape a towel over it.

Make sure they use a small tube.  My son used the formula feeds for two years and was up to 165 lbs, 5'10" and used a 6Fr sized tube (infant size).  It was easy to insert and did the job!  It seems to happen fairly often that kids have a tough time with the insertion of the tubes but the hospital has used a larger tube! 

Good luck with finding a solid diagnosis and with the tube! :ghug:


----------



## mummy2gastricboy

Hi, I've been here before.... 
If anyone can see my own thread they will get a bit of background info. .
Can I ask a quick question
lo is undiagnosed and hoping to get a diagnosis soon.
his stool looks like theres 'fibres' in them? Like hes been eating weetabix of something. Rather grainy andvery watery im gguessing its overflow as he suffers from chronicconstipation.
Any ideas? Thank you


----------



## Farmwife

Grace suffers from constipation also. She's had watery stool come out because of overflow of impacted stool.

Is the fibrous like stool coming out pencil thin? Is there a lot of it? Is there an odour that's nastier then usual?

Have you called the GI to update?


----------



## mummy2gastricboy

His overflow is always very foul smelling.  Its tiny pieces in overflow. Just so confusing!


----------



## Farmwife

Has he been tested for C. Diff?


----------



## mummy2gastricboy

Nope. Hes had endoscopies done which at first showed inflammation so started neocate advance and cmp free diet. Inflammation settled and eats what he wants (I wish it was enough but he eats very little) 
He had a colonoscopy done without bowel prep which obviously wasnt a true study as he had no clear outand a full one wasnt done so he said what he could see was ok which imo is pretty wrong as he should have said we can do another with bowel prep to see. He gets blood specs in his poo, pain at peg site, anaemia,  chronic constipation,  tummy ache, hes bad ulcers in his mouth, gets very sore bum with overflow,  pains in his arms,  orange blood? Out of peg aspiration, he also has reflux and has had meningitis septicaemia and is borderline autistic.  
Phew. Im sure ive missed something


----------



## Farmwife

Are you able to vent his peg and get gas out ?

What are all his meds?

Orange blood??? Wow


----------



## Farmwife

Wait, is the Orange blood in his stool or from a cut?


----------



## mummy2gastricboy

It was from aspiration from peg, he was admitted to hosp for it and dr said it was 'orange blood' and kept him nil by mouth for emergency scope but never did it


----------



## theOcean

Just wanted to draw attention to this thread here. There's a new member of the forum with a 13-year-old who is struggling to find a diagnosis and needs help.

I'm going to move the thread later to Undiagnosed/Parents of kids with IBD, but for now wanted to leave it in General IBD in the hopes more people would see it. If anyone could help out and respond in-thread, that would be lovely!


----------



## mummy2gastricboy

He had a good meal last night some chicken, chocolate cake and grapes. He woke up with tummy ache and was sick. No food, coffee ground blood and lots of mucus. 
He has on many occasions been sick with food thats come out undigested 10-15 hours later.


----------



## Cat26

Hey have date through for my daughter Katie's MRI of small bowel which is the 6th June.  We had gastro appointment on Thursday for results of biopsies which didn't reveal much.  She said there were some ? cells on them (said it can occur in some people forgot the name) but apart from that nothing much to see.  Still has patches of gastritis also.  Rheumatology have arranged for her to go into hospital for a week on the 19th May for intensive physio (has chronic fatigue/ME) and more tests from them and gastro.  Gastro going to try and bring MRI forward from June (hopefully) so she can have it done whilst in hospital.  Also going to repeat calprotectin and bloods.  She said if MRI is ok then going to do capsule endoscopy and because she needs another bowel prep for that she will repeat colonoscopy also.  She said calprotectin levels were 405, ESR levels have been 24, 19 and 38 and her ferritin and iron stores were low.  She has put her back on iron tablets again as was beginning to have same symptoms as before when it was low.  They are obviously still looking hard and so frustrating because something is going on but they don't know what.  She has become so constipated over the last few months.  Takes 2 laxido sachets and also lactulose and still doesn't go for 4 days at a time.  Has been having more pain on right side and Gastro said that was the area she was unable to reach.  Can you have constipation with Crohn's - I always thought your bowels were loose.  She also freaked me by saying perhaps Rheum were looking at a sort of vasculitis issue.  Anyone's kids had an MRI and how did it go?  She is to drink a liquid made up of 50ml of lactulose and water and worried how it will affect her as she is also Type 1 Diabetic and we need to remove the pump whilst in MRI which they have said will be approx. 45/50 mins.  Any advice greatly appreciated. x


----------



## Clash

My son has CD with location starting at the ileocecal valve and upward in the terminal ileum, since this is small bowel he doesn't tend toward diarrhea but more toward constipation. Not everyone with CD experiences D, some experience C and others deal with both.

As far as MRI my son had one with contrast. It lasted about an hour and he had to lay very still. He has also had an MRE(magnetic resonance enterography) which was great at visualizing the bowels and is no radiation. He recently had a CT scan as well.

I hope you are able to find some answers son Cat26!


----------



## Catherine

My daughter was dx at 16 with Crohn's.  She has no bowel symptoms.  Although she has had two X-ray which show whole large bowel full of stool.

Her main symptoms were low iron, anemia, stomach pain and in the final 2 months before dx severe weightloss.

So yes it possible to have Crohn's without the usual bowel symptoms.


----------



## my little penguin

DS had and still has constipation with crowns- so bad it lead to rectal prolapse.
he also had an MRE- about an hour of imaging time.

his ferritin is low as well.
good luck


----------



## Cat26

Thanks ladies much appreciated.   She will have contrast via cannula during MRI but has to drink liquid first then given some buscopan I think through the IV to stop bowels contracting.  Just wish we could get some answer now.  She has been T1 diabetic for 10 years, now had chronic fatigue syndrome for five years and been so unwell.  For the last five years they have kept saying they think something "else" is developing but not sure what.  Lots of auto immune of both sides of the family.  Had low C4 and borderline C3 in her complement bloods also.  Had bowel problems since becoming T1 and suffered with constipation on and off for years but these last two years been in so much pain with tummy and last six months constipation getting worse.  Good to be able to ask the questions on here so many unanswered.  Thank you all xx


----------



## Maya142

Hi Cat26, my daughter also has Crohn's with constipation. It seems like quite a number of kids here do.
I'm going to tag DanceMom, as she has some experience with vasculitis and immune disorders.
Hope the MRI goes well!


----------



## DanceMom

Unfortunately I do have some experience with vasculitis and immune disorders.  According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN).  Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects.  An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future.  We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing.  It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case.  We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay.  The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.


----------



## mummy2gastricboy

Is there anything I can physically do to help him? Apart from try and get a referral for the gastric team again? 
What do you think the orange 'blood' could have come from?


----------



## Cat26

DanceMom said:


> Unfortunately I do have some experience with vasculitis and immune disorders.  According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN).  Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.
> 
> A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects.  An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future.  We've put that off for now due to the risks involved.
> 
> As far as immune testing, we started with basic immunoglobulin labs and antibody testing.  It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case.  We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay.  The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.


Dane Mom thanks for that.  Unfortunately we are in Scotland and we have to go with the tests the hospital do - which can be very limiting.  She has had full Rheumatology testing done and this is repeated every six months at the moment.  Was involved with Immunology at the beginning and they diagnosed Idiopathic Angioedema as she gets swelling to her lips, face and left knee!!!  They have always just said it is her immune system over reacting which causes this.  I know they are keeping a close eye on things but don't do real indepth immunology testing - wish they did.

Thanks for all your help - have felt so alone - hubby putting head in sand and not facing up to whats going on.  Feel like she never gets a break from ill health and just want some "normal teen years" for her.  Hopefully we will get some answers from the MRI but not that optimistic as we thought we would get answers from endoscopy/colonoscopy.  

Thanks again xxxx


----------



## DanceMom

My daughter's lips swelled at one point too.  They would swell so large that they would split and bleed.  She was on Prednisone at the time so the doctors dismissed it as "moon face".  I'm not sure I buy that but I didn't push the issue.

Has she had her Immunoglobulins (IgG, IgA, IgM) checked?  That's a very simple blood test that could give some important information about her immune system.  It is a good starting point.


----------



## Cat26

Yes Dance mum I'm sure she has.  Unfortunately we don't get copies of her results.  I had to request a copy of her file (and pay for it) and its up to the doctor which letters they let you see!!  I feel I am in the dark as they usually only say whether the bloods are ok or just lately the levels of ESR, iron, caprotectin.  Normally her Rheumatologist will just say whether they are "ok" or not - never get told levels and only once did she tell us about the complement levels.  Wasn't till I got copy of file I saw level of C4 was 15 before she became ill and dropped to 8 and has only climbed back to 11 in last five years.  I do have copies of some of her blood results but don't know what any of the levels mean.  Am going to dig her file back out and see.  Unfortunately don't have copies of any of her latest results.  

Thanks again DanceMom for your help xxx


----------



## DanceMom

That must be difficult being left somewhat in the dark.  Very thankful for our online access to lab results!!


----------



## Cat26

Need some help ladies. Feeling really down today. Had phoned Gastro for Katie's MRI results last week and no one got back to me. Phoned again today and Dr Flynn just called to say scan was essentially normally. She had forgotten all about "pencilling her in for a capsule endoscopy and colonoscopy" if MRI was ok. Her lists are now full until after the 8th July even though she said it would be done the end of June beg of July. Asked about Calprotectin test that was done when she was in hospital on the 20th May and was still waiting on results of that also and it is now 856 which has gone up from 405 (Feb result), she had forgotten she had asked for the test again. Now she has saw this level it needs more investigating FFS! Now needs more stool tests to check for C-Diff (last two tests clear) and another Calprotectin. Will let us know dates for Capsule Endoscopy and Colonoscopy which she has new list available! She will discuss with Dr Davidson (Rheum) and get back to me. Asked if it could be her gastritis causing this level and she said no either infection or inflammatory bowel disease. Sje has also put the wind up me by saying on MRI her uterus was bulging with possible fibroids. She will need to speak to radiology again to see whether she needs an ultrasound and referral to adult gynaecology. She doesn't need anything else wrong with her for gods sake. Also been referred to Cardiology for Postural Orthostatic Tachycardia Syndrome. My stress levels are through the roof. This has been going on for months now. Getting fed up beyond belief. Just need to know what is wrong. Sorry just need to offload before I crack!


----------



## Jmrogers4

That's crazy I would be so p*ssed. Can she get her on a cancellation list for pill cam/endoscopy.  Seems like she should squeeze her in somewhere/somehow.


----------



## my little penguin

Can you get referred to the kiddie hospital in London ( Ormond St.. I think ?)?
Can you GP send the request for you ?
While you wait since they seem to have longer wait lists.

That sounds horrid .


----------



## Cat26

Thanks ladies.  She has said her lists are FULL and it will be when she gets her new lists made up!  Can't get a referral as would no a valid reason for second opinion and funding would be difficult to get.   (Have asked GP before).  He thinks it best whilst investigation ongoing to stick with Yorkhill.  Got the stool sample forms and luckily she managed to "go" last night.  Forms were for C Diff, C&S and Norovirus?   I thought norovirus was a short lived virus.  She didn't give us one for repeat calprotectin.   Anyone any advice re C Diff?   Her last two stool samples for "infection" came back negative but don't know if they were specific.  Also don't know why she is repeating colonoscopy as she only had the other one end of March and biopsies were ok but she couldn't reach small bowel which is why she did MRI and is doing capsule endoscopy.  She said she might as well do it as Katie would need the full bowel prep again for capsule!   Concerned at the rise in her calprotectin going from 133 two years ago when they diagnosed gastritis then 405 in Feb and now 856 - what do you think about it?   Also scared about the fibroids as she is only 17.   Just want some answers from it all now.   Thanks for being a listening ear.


----------



## Cat26

Phoned GP today and her stool results for infection are normal.  The couldn't do the C Difficile one as "c difficle toxin testing is inappropriate for non diarrheal samples".  It was a normal/hard poo she passed so they wont test it but diarrhea isn't her problem it is more that she is constipated and only has it when she has taken loads of laxatives to get things moving!!  Need to phone consultant on Monday to see if she has a date for us yet for capsule endoscopy and repeat colonoscopy!


----------



## my little penguin

ds has nothing but constipation - rarely bloody d.


----------



## Cat26

Looking for any words of wisedom ladies.  Katie had her upper GI endoscopy, capsule endoscopy and ileo-colonoscopy yesterday.   Her consultant was on holiday so it was a replacement consultant.  He said appearance of bowel and stomach was normal, even her gastritis has healed up.  He managed to get biopsies from the top of the small bowel and end of small bowel.  We have to wait till mid August to get the results of the capsule test as it will be her consultant who will review the pictures.   We asked him if appearance normal why calprotectin was at 856.  He said we would need to discuss with Dr Flynn but could possible be a false test.  Here is where I am confused for the last six months her calprotectin has been rising, her ESR has been raised and her ferritin was really low.  I asked Dr Flynn when she phoned us could it be a false calprotectin result and she said no!  So as you can see I am puzzled.  Her MRI was off normal appearance apart from the fact it showed a bulging uterus with possible fibroids (she is being referred to gynaecology for that).  Can you get a false calprotectin test - has anyone else here had this.   The one in March was 405 and the one in May was 856.   This is all messing with my head as they were testing her for the medication for IBD as well.  I know we have to wait on pictures from capsule but what if these show normal as well - what else could be causing the abnormal results for the last six months?


----------



## Mehita

Sorry if I've asked this already, cat26, but I can't remember all the details of your situation. Has she been tested for Celiac? Celiac can cause a high calprotectin level.


----------



## Cat26

Yes she has - she is Type 1 Diabetic so is tested every year for it and more since this has happened.


----------



## DanceMom

Is she on omeprazole?  I've read before that omeprazole can cause inflated readings on fecal calp tests.  Not sure how true that is.  A had a result in the 460s and was feeling well, but on omeprazole.  She recently had a result of 18 and was symptomatic, but not on omeprazole.  Makes me wonder.....


----------



## Maya142

Have you gotten the results of the biopsies taken during her colonoscopy? The reason I ask is that my daughter's bowel looked mostly normal when they did the colonoscopy but the biopsies showed chronic inflammation and granulomas, and so she was diagnosed with IBD.


----------



## my little penguin

^^^ yeah that same here
gi wanted to start functional meds but decided to wait the week for the biopsies.


----------



## Cat26

DanceMom said:


> Is she on omeprazole?  I've read before that omeprazole can cause inflated readings on fecal calp tests.  Not sure how true that is.  A had a result in the 460s and was feeling well, but on omeprazole.  She recently had a result of 18 and was symptomatic, but not on omeprazole.  Makes me wonder.....


Dance Mom - yes she is on Esomeprazole and was on omeprazole before that has been on it for almost four years now.   Didn't know that could raise it and consultant has never mentioned it before.  Just seemed strange that it rose so quickly - 133 two years ago, 405 in March and 856 in May.


----------



## Cat26

Maya142 and my little penguin biopsies from March should nothing and we need to wait 2 to 3 weeks for these biopsy results to come back.  Also they are checking her bloods for the chicken pox virus which I googled and there is research showing that it can lie in the lining of the gut for years and when immune system is low it can flare up so that's why they must be checking for that.  Also read that calprotectin can be higher with lupus and rheumatoid arthritis.  They have mentioned lupus in the past with Katie but so far her ANA has been negative but has a low C4 and borderline C3 complement in her bloods.  She said we would have a joint meeting with her rheumatologist to make a plan on where to go from here.   We have had so many things mentioned in the last few years I don't have a clue anymore.   Will just need to wait and see what biopsies and pill cam results show.  Will also ask about the esomeprazole.   Thanks for your replies just still feeling a little lost with it all.  Poor Katie is still so sore today and has a really sore back and tummy.  She still hasn't passed pill cam out yet either but only went in on Friday.  Her mouth is full of ulcers again and throat red raw looking.  Its knocked her off her feet again.


----------



## Cat26

Oh and forgot to say it took over four hours again for the piccolax bowel prep to work again.  Just seems really slow to work with her.  She is also being investigated at cardiology as well for POTS (postural tachycardia syndrome) which can also cause gastric problems also.   Wish we could go private but can't afford to and have to go through the NHS which takes forever.   She is booked in for a table tilt test for the POTS on the 8th of August so might rule out one thing soon.   Would be lost without this site to ask you wonderful ladies questions. xxxxxx


----------



## my little penguin

Random thoughts 
JSpA can cause joint issues ( including back pain) AND sub clinical inflammation in the GI tract.
Might be worth discussing with her Rheumo
http://www.medscape.com/viewarticle/543896

DS has JSpA / arthritis associated with IBD.


----------



## ben11

Hi guys need advice for 11 year old son was on  antibiotics for a month diaherra abdominal pain started no gi run 2 stool test pcr negative for c diff so he ruled that out fecal calpro 65 slightly raised gi thinks ibs upper gi normal can is have advice guys what do you guys think


----------



## ben11

Hi guys need advice son was on antibiotics for a month diaherra started abdominal pain gi did 2 stool test pcr negative for c diff he ruled that out upper gi normal fecal calpro 65 slightly raised pain worse at night still diaherra sometimes temperature. Gi thinks ibs Ben had a colons copy nothing seen need advice Ben is 11 what do you guys think


----------



## Fosterfamily2303

Hi all,
 I myself have crohns-colitis.  My son started showing symptoms in November.  Belly pain that comes in goes. Mostly by belly button. When he gets the belly pain he dosent eat and has increases loose bm. He has had his appendix checked. Normal. He had a ct only thing showed was pnenomena (which was odd as xray was normal? ) his blood ct showed extremely low wbc (range was 5.0-14.5 and his was 2.9) , his sed rate was high (range 0-20 and his was 29), rbc-dw I think it was ..was low but forget the numbers off hand. 

We finally got ped agree to gi at a children's hospital which is Tomorrow- Wednesday. His blood and cdiff stool was all negative.  

I have kept a diary for 2 weeks and no relations to food with the belly pain .


----------



## Cat26

Hi haven't posted for a while as so many tests on Katie taking so long. We are still no further forward they completed pill cam (first one didn't work and had to wait on another appointment).  What that showed is raised lymph nodules throughout her bowel and up intestines and into tummy.   Gastro said she has only really saw this before in babies with a milk allergy (we have tried excluding milk before for a month with no difference).  She is going try her again on exclusion diet.  She is also being investigated for autonomic nervous system neuropathy (due to her diabetes) as they have discovered she has POTS (when standing her heart goes to fast).  Been started on heart medication but they have also said it could explain gut and bowel problems as nerve could be damaged.  Still has a raised calprotectin level and slightly raised ESR and CRP.  She is going to be moved soon to adult clinic for Rheum and Gastro - have a meeting with them next week.  Have been asking gastic emptying test for last 2 years and still waiting so need to put my foot down.  Gastro said she also hasn't ruled out an auto immune condition or possibly the start of Crohn's but not sure.  Living in Scotland so we have to take what the NHS gives us and can't afford to go private.  Hopefully autonomic tests will gives us an answer and the rest is just wait and see


----------



## Clash

I was dx'ed with POTs. There are a large portion of those with POTs that have gastroparesis. So I think the gastric emptying test would be important. Autonomic nervous system dyfunction can play havoc with so many different things. If she already has some neuropathy I would push for the array of autonomic functions rests. Although, I guess diabetes can cause neuropathy as well.

I hope you get some answers soon and the heart meds keep her heart rate in check.


----------



## Cat26

They have put off doing gastric emptying for over 2 years but I will be asking for them to do it at the meeting next week.   Although she has been Type 1 for 11 years her diabetic control has been good and they think she may just be one of the unfortunate ones who develop complications even though she (and I) have done our best to try and keep things at a good level.   They have mentioned gastroparesis before in the past.   She is on Domperiodone already and cyclizine and Zofran for sickness.  Thanks for all your help. xxx


----------



## GwensMom

Hi! I'm Melissa and my 13yo daughter, Gwendolyn has been told that she could possibly have Crohn's or UC. Three and half weeks ago she began experiencing diarrhea. At first I thought it was just the stomach bug that has been plaguing so many right now, but after 4 days with no sign of relief and increasing frequency I decided to take her to the doctor. At the appointment I told the doctor about how frequent she was going and how uncomfortable she was. She was having some pain up around her belly button. We were told to try Imodium and see how she was over the weekend. Monday (3-2-15) I called the doctor's office and told them that the diarrhea was getting worse, not better. They ordered a stool culture. By Friday (3-6-15) she had obvious bleeding when having a bm. I called the doctor yet again and another stool culture was ordered along with blood work. The following Monday (3-9-15) I pushed to have her seen by the doctor again. Her appetite had disappeared and she was still having diarrhea with blood about 11 times a day. She had lost 11lbs in two weeks. All the test results were coming back normal.. I'm still not sure what they found in the blood test as we were still waiting for results the last I talked to anybody. We were finally referred to a GI. and saw him on 3-12-15. Tomorrow she is set to have an upper endoscopy and colonoscopy. I am hoping for some sort of diagnosis so they can start some sort of medication and she can get some sort of relief.

Gwendolyn is hanging in there. After seeing the GI her appetite has been slowly returning. She is still getting pain and seems to have to run to the bathroom more often when she is moving about. Sleep has become her best friend. She has been out of school for almost a month now and falling behind drastically. I am so sad to see how this is effecting her and I feel very helpless because there is nothing that I can do to help her.  

This afternoon she will be starting the miralax prep and I'm pretty nervous about it. With her already frequent bathroom trips and the bleeding when she has a bm I'm worried about what this is going to do to her. This is also the first time she will be going under general anesthesia so that brings on more worrying. She is taking this all in stride and doesn't seem nervous or worried about anything other then getting the IV put in.  If anybody has any tips or advice on making a prep go smoothly I would truly welcome it.


----------



## Jmrogers4

Hope the scopes provide answers and you get a solid plan moving forward.
Clean out is no fun.  We try and make the bathroom as comfortable as possible a small stool for the feet (even a box), video player.  Blood is scary and it always seems like there is a ton.  We have had to make games out drinking the miralax in order to get it down.
We usually get to clear (actually yellow) pretty quickly, hope it is the same for you daughter.


----------



## CarolinAlaska

Miramax prep is not too hard on them.  I think your daughter won't be too bothered by it after what she's been through.  I'm sorry she's had such a rough month.  I hope they can find out what's wrong quickly.  Have her drink lots to keep hydrated all day!


----------



## Misty triplett

My 13 yr old son diagnosed with crohns a couple weeks ago. Never showed symptoms leading up to this prior flare. I had never even heard of crohns and dont believe it runs in my family anywhere.
He had the flu mist about a month prior to his first flare and I hate to think it was the trigger to the flare. 
Does anyone know any information on this?
Creates a lot of guilt for me...


----------



## my little penguin

Mommy guilt is normal 
If they knew what caused crohns - no one would do"that"...
However they don't know 
My kiddo was dx at age 7. No family history of crohns either
He is 11 now so it been a few years
Give yourself time it takes a while
Tagging crohnsinct clash Tesscom jmrogers4

Welcome to the club no one wants to join


----------



## CarolinAlaska

We all wracked our brains trying to figure out what WE did wrong.  No one's at fault.  Hang in there.  The stress does get better.  Or maybe we get stronger?


----------



## Misty triplett

I hope it does get easier...
Does there seem to be a catalyst for most? I guess something that set it all in combination with the other components believed to play a role in crohns?


----------



## Clash

I had Mommy guilt since my son's complaints started after he started a px of antibiotics for acne. But the inflammation present had been there much longer than the span of the antibiotics.


There is no certain combo of things that creates a catalyst. A flare(not necessarily the disease) can have different triggers for everybody(or different believed triggers) or no triggers at all.

I let go of the Mommy guilt my time is better spent looking forward with research and insight on how to best prepare him for dealing with this illness, newest meds, etc etc etc.

Good luck.


----------



## Misty triplett

Thanks all for answers


----------



## crohnsinct

We are all experts at the mommy guilt but truth be known the thinking now is that there are many different types of IBD and each has it's own unique combination of causes etc.  Think G.E.M.  (Genetics, environment and microbial).  Once I started understanding more about the disease I was able to let go of the mommy guilt.  Next comes the trying to understand it.  It is so different for everyone.  I, like Clash, put all my energy now into research, monitoring and trying to make my kids the healthiest possible to combat the disease but also the damage the meds do to their other organs etc. 

My older daughter was the same as your son.  Few ,very slight symptoms that I managed to ignore for two years until her first flare which ended her in the hospital in ICU!  Talk about guilt!  But the docs were all great, emphasizing that it was nothing I did or didn't do and that even her ped didn't pick up on it.  

Hugs!  It gets easier and the community here is great at helping you move along.


----------



## Misty triplett

Very tough stories to hear from everyone 
I pray for a cure for our children.
Thanks for sharing 
Seems like a common theme is medications that are so common in our lives that cause flares


----------



## Pilgrim

I *think* I saw signs after my daughter had a rotavirus vaccine at 2 months of age. But she started her flare just after her 3rd birthday. But there is no way to know. Don't be too hard on yourself. Try to focus on helping him work through with a feeling of hope. It's tough to be diagnosed at that age.


----------



## my little penguin

Misty
I think you missed the point
The cause of crohns is not known period too much variability among different groups etc...,

Stating A happened therefore C happened isn't as clear cut.

As a parent I have found it best to focus on what I can control
- be informed on the lastest research -treatment s ( see pediatric research sections )
- teach my kiddo life skills on how to cope /function with school etc even when his crohns is not in remission - life long disease that needs to be dealt
- teach my kiddo how to manage their disease - drugs/insurance companies/doctors/tests etc.,,,,


----------



## Clash

^Agreed. Even though my son's complaints started after antibiotic use it was clear he had damage dating much further back. So you can't attach he had antibiotic to he developed CD.


----------



## Misty triplett

I agree it's very complex and not one thing or medication is at fault it just seems that there is a trigger of some sort to cause an initial flare and for many it seems to be a medication. Even though symptoms may have shown prior possibly unnoticed. I will focus on moving forward because there is no other option, I just think like many who are new to this I am looking for answers and hope that they are found someday to avoid future issues.


----------



## my little penguin

Thing that helped me
23 & me Ibd study
DS has 148 different snps associated with crohns including nod2


----------



## Misty triplett

I will check those out, thanks for the help


----------



## my little penguin

https://www.23andme.com/ibd/

Free study


----------



## maudmere

Hi Im brand new to this forum and so happy to find it. I hope Im posting in the right place. Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar? My child is currently being tested for GI issues and his doctor is putting all future testing in the hands of this test and Im uneasy about relying on one test.
Backstory:  I myself was diagnosed with Crohns disease a few months ago at age 34, its been something Ive always dealt with and was labeled IBS/anxiety. It has not always been easy for me, but thankfully so far my flares have been mild-moderate. After several tests and finally seeing a GI who immediately ordered endoscopy/colonoscopy followed by the pill endoscopy- I now had a name for it- and although still in a flare Im having some success with Pentasa and just finished a round of Entocort/Uceris for partial obstructions. 
All of my focus however is aimed towards my 7 year old.  We have been working with a pediatric GI who is considered one of the best here and I do like him, but Im considering getting a second opinion from a different GI group.  My 7 year old has suffered from a few years of off and on- constant diarrhea, horrible abominable pain, losing stool at school/playing/etc. and has gained NO weight in over a year. He has fallen off the growth chart for his age and keeps dropping. What scares me is that his symptoms started exactly as mine did, the exact same age as mine did- as a lactose intolerance in kindergarten. His GI will not test invasively, scope, etc. unless he gets a "green light" from certain tests- something showing inflammation in the stool, especially the Fecal Calprotectin test and my son has received normal results on that. The only non invasive test that came back positive was a strong positive  on the hydrogen breath test testing for lactose.  At this point his diarrhea and pain is somewhat being managed because we have cut out all lactose, BUT he is still is not gaining weight (which is not indicative of lactose intolerance) and his stool is still not perfect.  My GI (he does not treat my son) advised finding someone to scope him because of where MY ulcers and crohns is and how my disease presented.  i have shared all my records with his GI.  I just struggle with getting that 2nd opinion and possibly putting him under and doing these procedures when his doctor does not believe we need to and wants to avoid the risk, and wants to label him IBS for now. Im battling putting him through an ordeal/risk when he may not need it, but I just can't shake my own personal knowledge of this disease and the fact that I too would get a positive hydrogen breath test- because of the damage done by Crohns.

So my question is- have any of your children ever had a negative result on the Fecal Calprotectin test or not shown WBC in their stool, etc. and then found out they DID have an IBD disease?  Is it a test worth challenging?
Thank you so much. Im very grateful for any advice.


----------



## Crohnick

maudmere said:


> Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar?


Hi Maudmere. Welcome to the forum. Wish there was different circumstances you had to post here.

My son was diagnosed with Crohn's at 13. Though always on the lower end of growth charts, he tapered and started moving off the chart at 10. Because he showed no external signs of CD, pediatrician wasn't worried until 12 when no change in growth velocity got us a referral to GI. His labs have always been normal. Only biopsy results on scope gave the definite diagnosis of Crohn's. 

Not sure what part of Texas you're in but Children's Medical Center in Dallas or Texas Chilldren's in Houston have really good pediatric GI units. See if you can get a second opinion at one of those if your GI is hesitant for scope. 

Also, has he been tested for Celiac?

Good Luck! This is a great forum and I have learned a lot from the excellent advice of many parents with a lot more experience with the disease than me.


----------



## Jmrogers4

I would definitely seek out a second opinion.  My son's labs have always been in the normal range except at initial diagnosis but inflammation was running rampant at that time and lots of activity at the TI and in the large intestine.  
He was scoped based on that and the fact his father has crohn's and it was immediately apparent we were dealing with Crohn's disease. Fast forward 4 years and dealing with lack of growth and weight gain the entire time we had assumed his disease was under control based on labs.  He was given a fecal calprotectin test and it came back elevated but only slightly second FC given a month later was just a little higher then that all other labs still in normal range.  He was given an MRE and they found tons of inflammation in the small intestine (not somewhere his father is affected).
Medicine was changed and he finally truly reached remission (gained 40 pounds and grew 7" in a year).  His GI last visit thanked me for pushing as he would have just assumed my son was meant to be small but my mommy gut kept saying we were missing something.
Scopes with biopsies seem to be the definitive test and I have heard of several GI's who will not use FC as they don't think they are reliable.  Have they only done stool tests?  What did blood labs say?  ESR levels? CRP levels?  Some people just show better with different tests.


----------



## Farmwife

maudmere said:


> Hi Im brand new to this forum and so happy to find it. I hope Im posting in the right place. Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar? My child is currently being tested for GI issues and his doctor is putting all future testing in the hands of this test and Im uneasy about relying on one test.
> Backstory:  I myself was diagnosed with Crohns disease a few months ago at age 34, its been something Ive always dealt with and was labeled IBS/anxiety. It has not always been easy for me, but thankfully so far my flares have been mild-moderate. After several tests and finally seeing a GI who immediately ordered endoscopy/colonoscopy followed by the pill endoscopy- I now had a name for it- and although still in a flare Im having some success with Pentasa and just finished a round of Entocort/Uceris for partial obstructions.
> All of my focus however is aimed towards my 7 year old.  We have been working with a pediatric GI who is considered one of the best here and I do like him, but Im considering getting a second opinion from a different GI group.  My 7 year old has suffered from a few years of off and on- constant diarrhea, horrible abominable pain, losing stool at school/playing/etc. and has gained NO weight in over a year. He has fallen off the growth chart for his age and keeps dropping. What scares me is that his symptoms started exactly as mine did, the exact same age as mine did- as a lactose intolerance in kindergarten. His GI will not test invasively, scope, etc. unless he gets a "green light" from certain tests- something showing inflammation in the stool, especially the Fecal Calprotectin test and my son has received normal results on that. The only non invasive test that came back positive was a strong positive  on the hydrogen breath test testing for lactose.  At this point his diarrhea and pain is somewhat being managed because we have cut out all lactose, BUT he is still is not gaining weight (which is not indicative of lactose intolerance) and his stool is still not perfect.  My GI (he does not treat my son) advised finding someone to scope him because of where MY ulcers and crohns is and how my disease presented.  i have shared all my records with his GI.  I just struggle with getting that 2nd opinion and possibly putting him under and doing these procedures when his doctor does not believe we need to and wants to avoid the risk, and wants to label him IBS for now. Im battling putting him through an ordeal/risk when he may not need it, but I just can't shake my own personal knowledge of this disease and the fact that I too would get a positive hydrogen breath test- because of the damage done by Crohns.
> 
> So my question is- have any of your children ever had a negative result on the Fecal Calprotectin test or not shown WBC in their stool, etc. and then found out they DID have an IBD disease?  Is it a test worth challenging?
> Thank you so much. Im very grateful for any advice.


I second the second opinion. :hug:
My 6 yr old had a long painful road to diagnosis. Everything was coming back normal (and still does) except the scopes. Her first GI called after the first scopes and said sorry he didn't believe me because all the testing was coming back normal. It was me pushing and pushing and pushing that got her scoped.
As to her FC results....ya they elevated a little in an active flare but not out of the normal range. Her highest was 60ish (active flare) and her lowest is under 20 (remission). A lot of people are in the 1000's but not Grace. Also her labs are always good.
What was your daughters?
 Keep pushing mom!!!


----------



## maudmere

Thank you so much Chronik, Farmwife, and Jmrogers4, this is exactly the type of info I was hoping for.  To answer your questions, just blood and stool tests at this point. and yes he has been tested twice for Celiac, both negative. 
we haven't done anything invasive (until doctor sees evidence of inflammation in stool he will not do that) but we've done: ova/parasite, fecal fat, giardia, pancreatic elastase, occult blood stool, celiac, CBC, TSH/T4, bone age (to see if bones were growing normally, they are), hydrogen breath test, and fecal calprotectin. All came back normal except for the HBT/lactose which was a high positive (which i suspected because I had already noticed the dairy link.)   don't think they did ESR or CRP levels but am going to ask.  He puts a lot of stock in the fecal calprotectin test, and as much as I hope he is right- Im think Im going to go with my gut on this one and get another opinion. Thank you for sharing your input-there aren't many people that I can talk to about this so I truly appreciate it.


----------



## crohnsinct

maudmere:  I am a big fan of the FC test as is our doc.  The incidence of a false negative is low but no test is perfect!  Add to that the fact that there are also people who test negative on Celiac blood tests but at endoscopy, Celiac can still be found. 

I understand the doctor's reluctance to move to more invasive testing given the test results, however, if the patient is simply not getting better then I would think it is their obligation to search further for answers.  

The risks of endoscopy are low and a lot of the kids here will tell you that the prep is not as horrendous as they thought it would be.  As my younger daughters said, "I am willing to do whatever I have to do to feel better".  

If you do scopes and can cross off Celiac and IBD, then you can move on to other causes and are that much closer to an answer.  

Good luck!


----------



## Misty triplett

I am hoping someone knows... 
Since my son is only recently diagnosed and starting his meds has seemed to help with many of his symptoms- diarrhea, fever. But the last couple days the diarrhea has come back and he woke up with a fever this morning. He also doesn't seem as hungry as the past couple weeks from the steroids
Should I be concerned of symptoms returning or possibly just a bug going around?
His abdominal pain doesn't seem worse at the moment.
Thanks


----------



## crohnsinct

T just had a diarhea bug so it is possible. What meds is he on?  Have you tapered the steroids recently? 

Since he is newly diagnosed,  I would call the doc and inform them. For my daughter they had us wait three days and that is exactly when the virus left.


----------



## Misty triplett

We did go to see dr and turns out there was an abscess so I am glad we called.


----------



## Misty triplett

Looking for more help on diet suggestions.. Recent diagnosis of CD for my son, started prednisone and methotrexate .. Abdominal pains from a 1-10(10 being worst pain) still staying at a 1 or 2 most of the time. We can't quite figure out what to do to bring the inflamation down more.
We have cut gluten out which seemed to help quite a bit, very little dairy, and limit sugar.
Did anyone cut sugar out completely finding this helped? He drinks a boost or ensure to make sure he's getting adequate nutrition with all the diet restrictions and those have sugar so I am concerned about cutting those out

Thanks


----------



## my little penguin

Honestly it takes time for the gut to stop sending pains signals sometimes after a long time if inflammation.
So if you were just dx you need to wait to give the med a chance to work and get his system to calm down despite food

Methotrexate takes at least 8 weeks to even reach a consistent level in the blood .


----------



## Pilgrim

We tried a complete SCD diet, no refined sugar and very limited honey. Unfortunately, it made things worse. What helped our daughter was going to a 100% Ensure diet for 6 weeks. If you are waiting for MTX to start working I would ask about 100% Enteral Nutrition (Ensure or Boost type) for 8 weeks.

I hated all the corn syrup too in the drinks, but in the end it is what worked for her, for whatever reason.


----------



## Misty triplett

His dr said because of the abscess in his bottom area that the nutritional drinks aren't the best route because the need to keep the inflamation down in that area, we are switching to remicade soon for that reason. I did try to initially to have him do the formula but as a 13 year old boy that felt impossible to him. Not sure I could have forced that decision on him even though it would have helped I'm sure


----------



## Maya142

Has he tried drinking Peptamen instead of ensure/boost? Ensure and Boost are less "broken down" and may be harder to tolerate. Some kids can tolerate Ensure/Boost just fine, but others like my daughter need semi-elemental (Peptamen) or even elemental (Neocate) formulas.

My daughter's GI told her to eat very bland food when she was first diagnosed and flaring. She said potatoes are generally easy to digest. My daughter has issues with dairy but not with gluten. Honestly, it's just trial and error in terms of food. Remicade should kick in relatively fast but even that can take 3-4 infusions - 6 weeks or so. 

Hang in there - I know it's easier said than done!


----------



## Misty triplett

I usually just give him a boost or ensure each day for the lack of nutrients in his diet. We mainly go with a bland diet, low fiber, low dairy and sugar. We cut the gluten out completely because his abdominal pains were pretty bad. It seemed to decrease the pain quite a bit or maybe it was just coincidental. Dairy doesn't seem to bother him too much as I can tell. I'm not really even sure how to know what bothers him , is it usually pretty immediate for your daughter that she knows. It's all so overwhelming trying to figure it out.
He was not interested at all in the formula only diet unfortunately.
What is the best way to know if something is hard on their stomach? I just can't seem to tell if it's immediate or takes a day or two to tell.


----------



## Maya142

Honestly it's trial and error - for her she has diarrhea a couple hours after having a lot of dairy (she can still eat a little). Stomach pain is generally quite soon after (within an hour or two) or eating the offending food.

You could try keeping a food diary to see if that helps you figure out what is causing symptoms.


----------



## Misty triplett

Right now he's in a flare so has diarrhea anyway.
Guess we will keep trying to see what works or doesn't


----------



## Pilgrim

Remicade sounds like a good plan. Usually starts to work fairly quickly in a lot of cases. I mentioned the Enteral Nutrition as an option to use in combo with your med choice. It can cut down on the pain. It would be hard to do it if he refused though. Maybe you can get him to do 50% of calories from drinks until the meds are working.

Otherwise we stick to bland. Crackers, but no bread. No fluid milk. Small amounts of fruit and veggies. We can't get our daughter to eat regular size meals for her age. It is trial and error as said above.


----------



## Misty triplett

We can try that... He had an enormous appetite prior to now being on antibiotics fighting the infection from the abscess. The antibiotics say not to take them with other minerals that the formulas contain such as calcium and magnesium within a certain time frame so makes it tough with school and timing all the pills around that.
I really feel like giving up sometimes.


----------



## Pilgrim

It's a lot of stress and unbelievably tough until something starts to work. 

Maybe if you can sit down and plot out a meal or formula plan around his meds and school. I find that when I'm under a lot of stress putting things on paper and then re-arranging if necessary helps. It's less to keep in the brain.

I'm not a hugger but I'll send one your way. It's just miserable stuff. All of it.


----------



## Misty triplett

I've tried the food logs to see what was hurting more but I couldn't find anything but possibly the gluten, taking it out did decrease his pain but now with the diarrhea back I don't know how to tell what else could be bothering him,
Do most moms get to stay home with kids? I have had to miss so much work which doesn't help with the stress


----------



## Jmrogers4

The School nurse became my best friend when we were doing the antibiotics round along with formula drinks to keep everything on track and given at the right time.


----------



## my little penguin

Fmla and lots of help from relatives /school nurse
Are how we manage ...


----------



## pdx

Yeah, it's hard!  I ended up resigning from my teaching job a month after my daughter's diagnosis.  She was too sick to go to school and too sick to stay home alone.  I'm grateful that our family's health insurance is through my husband's job, and that we can get by without my paycheck.

The question of what to eat is also really hard; we're struggling with that right now.  My daughter was on NG-tube feeding for 8 weeks, and is just tapering off that right now.  We've been adding back foods from the first 2 phases of this diet, which is a less-restrictive version of the SCD diet:

http://www.nutritionj.com/content/13/1/5/table/T2

Here's some more explanation about the diet:

http://www.umassmed.edu/nutrition/healthy-eating/gastrointestinal/ibd/

She is now getting 1200 calories of Peptamen each night through her NG tube, and about 800 calories from food.  The foods that she's tolerating right now include plain full-fat yogurt, honey, bananas, cheddar cheese, eggs, salmon, and smoothies made from unsweetened juice, yogurt, bananas, avocado, and cashews.  She got a little diarrhea from tofu and oatmeal, so we'll wait a while before trying them again.  (It's been fairly easy to figure out what she's tolerating because she's not eating that many foods; we're adding in just one food each day right now.)

She's not complaining too much about the diet right now, but I can tell she's getting bored with it.  We're all hoping that if she goes into remission, she'll be able to eat a wider range of foods.


----------



## Misty triplett

Thanks for the suggestions 
I'm glad insurance was through your spouse. My family is covered through mine 
I know everyone says this gets easier hoping it does soon.
Anyone have an opinion humira vs remicade?
My son decided on remicade infusions over the shot regiments and soreness of those .
I really don't know what the difference is.


----------



## Maya142

My daughters liked Remicade WAY more than Humira. Remicade is an IV every 4-8 weeks (depending on how often your child needs it - every 8 weeks is standard). Humira, on the other hand, is a painful injection that is given every 2 weeks (can also be weekly). 

My daughters have been on both and though they got used to Humira, they really preferred Remicade - they liked to take a day off from school for infusions, it was a chance to nap and watch TV. They both said that Humira burns a lot and many other kids say the same.

They both work well - in fact, some GI's prefer Remicade because there is more flexibility with the dosing which helps when you have growing kids, so I wouldn't worry about your son's choice.


----------



## Pilgrim

We use Humira, but I know a lot of GI's like Remicade more because they have more experience with it. It's been used on Pediatric patients longer. There is more research.

I do stay home. I was going to bring in a second income in a few years but we decided  instead to sell our home and downsize to about half what we're in so that I could continue to care for the kids myself. It does get complicated with Crohn's. My husband provides insurance but it doesn't cover her Humira anyway, so that wouldn't matter either way. We've had lots of denials this year, insurance wise.


----------



## Misty triplett

Need more advice
Son with CD having to take heavy doses of antibiotics. Doing a stool sample this morning and stool has no scent and a lot of mucous. I haven't noticed the mucous before the antibiotics, is there something I can give him to restore the mucous and should I notify his Dr?


----------



## Jmrogers4

Remicade here one reason is compliance is not an issue which as a teenager can sometimes be in issue.  No more worries/checking to make sure he has taken is med.
he also likes getting off school once ever other month, watching movies, etc.
We may switch to humira once he goes off to college but have a couple of years before that bridge only because the college he is currently planning on attending is a 5-6 hour drive and not an easy drive in the winter and his ped GI will continue to see him through college.


----------



## Misty triplett

Any recommendations on what to do now... Changed from methotrexate to remicade but inflammatory markers were still high as of last visit for my son. He is off gluten very low dairy but I don't seem to notice more pain because of certain foods. Does the medication make it more difficult to determine what foods are keeping the markers so high? We haven't tried SC diet yet due to his reluctance. 
Don't know what else we could cut out and he still gets to eat.
Feels like nobody knows what to suggest so hopefully I can get some direction here


----------



## my little penguin

How long has he been on remicade ?
It takes 6-8 weeks ( 3 plus infusions for remicade to work)
Food is not making the inflammatory markers high.
You need to give the medicine time to work .
My two cents -Waiting until he is healthier would be better to try to figure out if any foods irritate his gut .
Remicade is strong but it still needs time to work.
If your worried about nutrition
Rather than taking away food you can add en as supplement to food which will boost the remicade as well


----------



## Misty triplett

Only one infusion of remicade but been on methotrexate 5 weeks or so.
Had to switch due to perianal(sp?) crohns developed.
I took him off gluten because it seemed to cause pain but I really do to know for sure with all the meds what is what. 
Has anyone you know been able to control symptoms with SC diet with the perianal crohns. I hope as he gets older and matures he will be able to get off meds and control with diet


----------



## my little penguin

Methotrexate takes 8 weeks to be fully effective
Remicade is going to take a while
Perianal disease is very difficult to treat but remicade has a good success rate with that area.
If he is inflamed then your going to have to wait a while ( 6-8 weeks ) to figure out what is causing what .
Gluten may not have had anything to do with the pain
Meds need time to work .
No one can tell the future but giving the meds time to work first before changing anything else . Ibd kids need extra calories and pulling foods that may not need to be pulled just makes that harder.

Most kids I know did not have success on SCD and most have ended up losing weight.

Meds are hard to comprehend but kids tend to have more severe disease than adults since they are sicker longer


----------



## Misty triplett

Also is your child currently on the meds? And can you notice something that irritates while on the meds?
I've let him have dairy and doesn't seem to cause pain also have tried gluten here and there and haven't noticed much difference so I am just wondering if that is from the meds kicking in


----------



## my little penguin

My kiddo is on humira and methotrexate
It really obvious what both him once the meds kick in
My kiddo feels good but if he eats raw carrots 
He gets abdominal pain and watery explosive diarrhea within a few hours every single time.
Gluten and dairy may not even bother your kiddo 
Honestly it would be best to wait and let the meds work first


----------



## thawadt

My son was diagnosed as a celic at age 2! Now, many years after we found out that oh my God, Crohns disease can make someone celic, lactose intolerant and many more things! As a Crohns mom, seeing your son go through hell with diarrhea and pain it is so hard! Just very sad we didn't found out he had Crohns until I started to get really ill and ending a few times in the ER! Now it is going to be another test and diagnosis journey and hopefully soon he will have help and proper treatment!


----------



## Misty triplett

Did you ever try the formula therapy instead of meds first? I wanted to have my son do the nutritional therapy with formula but a 13 yr old boy he was not on board with no food and I'm not sure I could have forced him and not make his life miserable. 
I wish we could have so he's not on the meds
Just curious how that worked


----------



## my little penguin

Formula only is only temporary last for 6-8 weeks then you still need meds regardless.
So even if your kid did formula only he would still need methotrexate or remicade 
Formula only just replaces steriods to help reduce inflammation while you wait for methotrexate or remicade to work.
My kiddo did 9 weeks of formula only but he was also started on 6-mp at the same time.
Then he did prednisone plus 6-mp to see if that would help.
Later he did methotrexate plus prednisone until the methotrexate kicked in.
That didn't work either
Finally he was on remicade plus prednisone and that worked so he was able to wean the prednisone .
He also continued to drink formula as a supplment the entire time 
So diet really is not a fix for kids 

Large majority need meds to avoid surgery and strictures :abscesses 
Which is why your kiddos disease will be classified more severe .
Meds sound harsh but surgery or icu is worse .


----------



## Jmrogers4

It's really hard to tell until the meds kick in, We've tried the SCD diet and it seemed to help some with symptoms but when we stopped after a few months pretty much due to what MLP said he couldn't afford to lose any more weight and just wasn't getting enough calories there really wasn't a difference so maybe it was just the meds helping.  We also did gluten free for about 8 months and when we added gluten back in there was no difference but he was in remission at the time.
For us once the meds had everything under control we haven't seen an issue with any foods we try to eat clean but he's a teenage boy and I know he goes out to eat usually fast food every Thursday.
For us growth/weight gain was our biggest issue as my son is pretty asymptomatic and so we really started to notice a difference 4-6 months after starting then weight and height really started to take off. 
I know it's so hard to be patient with the disease as you just want them to feel better immediately but sometimes it's better to give it a little time so as not to "muddy" the waters so you know what's working if that makes any sense


----------



## Misty triplett

Do you think had he done the formula first the abscess would not have formed?


----------



## my little penguin

No 
abscesses , strictures etc form when the disease is more severe
Formula wasn't going to change that .
Some adults have mild disease 
But most kids are moderate to severe .

Relax let the meds do their thing and soon you will have things back to normal
Remicade and other biologics tend to give you that 
Normal where your kiddo doesn't hurt and looks good


----------



## crohnsinct

Formula does not have a good success rate with perianal disease.  Also, perianal disease can run it's own course independent of the Crohn's in other locations. 

My daughter recently completed 6 weeks of exclusive enteral nutrition while waiting for the methotrexate to get to therapeutic levels.  This brought her fecal calprotectin (the only inflammatory marker that works for her) to normal levels.  We introduced some food (first 3 weeks of 20% then another 3 weeks of 50% food).  Inflammation returned.  Returned even though methotrexate had 12 weeks to build to therapeutic levels.  For her it seems she would need EEN to stay in remission and this is just not feasible.  Kids need to eat at some point.  We are probably going to have to escalate meds in some way, shape or form.  

My older daughter is on Remicade and like everyone has said, once her inflammation was under control, no food issues.  BTW - it took 6 months for Remicade to get her to full remission and we had to add EEN to her treatment to get her there...we had previous tried steroids and she was declared steroid dependent.


----------



## Misty triplett

Thank you 
I've been wracking my brain thinking I've done everything wrong


----------



## Pilgrim

No, you haven't done anything wrong. When faced with this mysterious disease we simply have to make choices, and see what happens, and that is harder yet when you make the choices for someone other than yourself.

We did 6 weeks formula only - twice. Same as other parents here, as soon as we started to bring food in - and not just any crummy diet - specialized diets....for us she was bleeding again within two weeks. What the formula is good for is replacing steriods, as MLP pointed out. Or for supplementing to help the meds work better or improve growth. 

We finally went to biologics, for us Humira, and she is doing so well. She can eat a varied diet, and truthfully at this point there isn't much we have to avoid. If you get through the agony of choosing to put your child on a serious medication, then you may see some amazing results.


----------



## Jmrogers4

Misty triplett said:


> Thank you
> I've been wracking my brain thinking I've done everything wrong


We've all been there, mommy guilt is the worse but it's not anything you've done or haven't done and you can only make the best possible decision based on the facts you are given at that time and your own beliefs.
I thought my son wasn't that bad off and putting him on biologics was admitting that he was really sick and I fought it for a long time thinking that some small change would bring on the remission, SCD, gluten free, dairy free and I had to take that journey before I could admit that nothing was working and we had better try something stronger.
I turned out that was what he needed which of course brings about a whole set of new guilt about why did I fight so hard against it. To see him truly thriving and not sparing a thought to his disease except for once every 8 weeks or if we go to the movie and he wants popcorn (I still can't let that one go - I've been too afraid to let him try).
We all want our children to be well with the least amount of drugs.  Even having dealt with hubby's Crohns for 15+ years when son was diagnosed and new drugs were required I still had a hard time since it was my child and I was making these decisions for him.


----------



## Misty triplett

Yes it is very difficult to make these decisions for another persons life. I still feel like it's a shock every day that this exists. I had never even heard of the disease prior to my son being diagnosed a little over a month ago.
Life can change over night just like that.
I appreciate all the advice because like I said this is a new word to my vocabulary and now I'm trying to learn more than I ever wanted to know.
Prayers for all


----------



## my little penguin

It will get better 
First month I cried a lot
3.5 years later things are good and most kids don't even know DS has crohns 
Just give your self time 
First year is the hardest


----------



## Misty triplett

my little penguin said:


> It will get better
> First month I cried a lot
> 3.5 years later things are good and most kids don't even know DS has crohns
> Just give your self time
> First year is the hardest


I can't wait for the day... I cry everyday two months later.
There is so much info out there and it's so overwhelming.
Have any of you thought about fecal transplants or the anti MAP therapy?
My sons GI is heading much research going on with fecal transplants currently his 2nd trial is going on. My son can not be part of this trial due to the abscess that excludes him so I hope this new research will bring new options or cures.
I asked the GI opinion on the Anti MAP therapy and he said once the antibiotics stopped symptoms returned. 
With all the information out there I feel like I'm going in circles.


----------



## Pilgrim

There is SO much research out there and it's overwhelming but also exciting. I think our kids have more hope for the future with managing this disease. 

Are you at Seattle Children's? They seem to be one of the hospitals in the forefront of what would have been considered alternative therapies that are up and coming. 

Don't fret if he's excluded at this point. That means you'll have more information if it's available later on. The GI will give you the best options he or she has and then also offer you an opinion on which you should choose for your son. If you have to go through the med ladder you'll know soon enough what will or won't work. To answer your question about the fecal transplants, I gave it some thought. But I did read some terrible stories about perforations and hospitalizations after home transplants. That freaked me out. If if were available in hospital, I might consider it if she were a good candidate. AntiMAP therapy concerns me because in my head, if not in reality, antibiotics have seemed to hurt, not help, her Crohn's.

I think one of the big psychological hurdles is realizing you need to know all of this information, but in the end your options will be straightforward and you may not even have much choice. That will be doubly true if he ends up in hospital. 

I cried off and on until she was on a med that actually made her life better. It took a year for us to get to that point.


----------



## Misty triplett

Pilgrim said:


> There is SO much research out there and it's overwhelming but also exciting. I think our kids have more hope for the future with managing this disease.
> 
> Are you at Seattle Children's? They seem to be one of the hospitals in the forefront of what would have been considered alternative therapies that are up and coming.
> 
> Don't fret if he's excluded at this point. That means you'll have more information if it's available later on. The GI will give you the best options he or she has and then also offer you an opinion on which you should choose for your son. If you have to go through the med ladder you'll know soon enough what will or won't work. To answer your question about the fecal transplants, I gave it some thought. But I did read some terrible stories about perforations and hospitalizations after home transplants. That freaked me out. If if were available in hospital, I might consider it if she were a good candidate. AntiMAP therapy concerns me because in my head, if not in reality, antibiotics have seemed to hurt, not help, her Crohn's.
> 
> I think one of the big psychological hurdles is realizing you need to know all of this information, but in the end your options will be straightforward and you may not even have much choice. That will be doubly true if he ends up in hospital.
> 
> I cried off and on until she was on a med that actually made her life better. It took a year for us to get to that point.




Yeah his GI is at children's in Seattle and he really seems to push alternative thinking to treatments, I am thankful for that as there is research being done but very tough that it takes so long as people are suffering.
I know we all want out normal lives back and want it soon.
It's tought when you feel no control and backed into the only options at the time to treat our kids


----------



## Misty triplett

I submitted a request for the 23 and me IBD study for my son. Is this something any of you have done and comfortable with ?


----------



## Jmrogers4

Quite a few of us have.  Here's a link to another thread that has a bunch of information on it.
http://www.crohnsforum.com/showthread.php?t=67893


----------



## my little penguin

Yep
Btdt
Confirmed crohns many times over for DS
Gi and rheumo love getting the gene test results 
Sorta explains DS more


----------



## Misty triplett

Have any of you considered for your child a time when you may try no meds and a raw veggie/juice diet? Or elimination diet?
I know as a child it's tough because they need to grow, I would love a time with no meds


----------



## my little penguin

Would you treat a Broken inflamed infected foot without meds?
His intestine is inflamed /swollen
The ulcers are basically cuts .
The difference you can see it everyday -it's inside 
Google pictures of crohns removed colons
See the damage the disease does 
Then tell me you want to try "juice" as a solo therapy.

Disease in kids is NOT the same as adults the phenotype is different meaning the disease tends to be more aggressive and 75% have surgery to remove intestine within 5 years .
Once you have one surgery the odds of another goes up.
No intestine ( small) equals no nutrition and death period
Paging dusty and crohnsinct 
Icu is a very real possiblity when you do not treat the disease

Juicing and raw veggies alone without any meds is basically not treating the disease


----------



## my little penguin

> Another type of surgery for strictures is a small bowel resection. This procedure involves removing a short segment of the small intestine and joining together the two healthy ends of the intestine (called an anastomosis). You might also need a small bowel resection if you develop a hole in the wall of your small intestine.
> 
> After this procedure, you may not have any Crohn's symptoms for many years. However, about half of adult patients will experience a recurrence within five years. This usually happens at the site of the anastomosis. Medications, such as immunomodulators or biologics, may successfully treat recurrences. Still, about 50 percent of people with recurring symptoms will require a second surgery.
> 
> You might experience a condition called short bowel syndrome after having bowel resection surgery. Your small intestine plays a vital role in moving nutrients from digested food into the bloodstream to nourish your body. If too much of your small intestine is removed, you can become prone to nutritional deficiencies. Short bowel can also lead to chronic diarrhea and electrolyte abnormalities.
> 
> Short-term side effects include bleeding or infection after surgery. You may also be prone to diarrhea and complications related to diarrhea, such as cramping and abdominal pain, for 6 to 12 months after your surgery as your bowel adjusts to its new size


http://www.everydayhealth.com/crohns-disease/the-side-effects-of-crohns-surgery.aspx



> Usually Crohn's disease surgery is an option when other treatments fail, but it's important to be prepared for side effects, both short- and long-term.
> 
> "The most common reasons to have surgery are if medications aren't working or your disease gets worse," says James P. Lynch, MD, chief of colon and rectal surgery at Beaumont Hospital in Troy, Mich. Signs that this is occurring are a perforation, blockage in your bowels, abscess, fistula, or bleeding.
> 
> 
> 
> Up to 75 percent of people with Crohn’s disease will need surgery at some point. Some people may choose it because of uncomfortable symptoms. Others will need it due to disease complications.
> 
> The three most common types of surgery for Crohn's are strictureplasty, resection, and proctocolectomy or colectomy. Here's a close look at each type and their side effects.
> 
> Strictureplasty
> A strictureplasty involves widening a stricture — a narrowed area of your small intestine — without removing any part of it. A colorectal surgeon makes an incision along the narrowed area in the small intestine and then sews it up crosswise. This widens that portion of the bowel (and shortens it as


----------



## Catherine

We tried the FODMAP diet at the time my daughter un-dx.  We didn't know how sick she was.  She hated the food so starting to eat less.  We stopped the diet after a few weeks.  We had trouble getting her to eat at all.  She lost 5kg leading up Christmas, and in January she lost 7 kg.

At her lowest she weight was 43kg and 5ft 8.  

Her relationship with food is mess up.  We worry about how thin she wants to be.

So no wouldn't consider diet as a sole treatment.


----------



## crohnsinct

Responding to the page...Untreated disease.  That is basically what my daughter had for two years.  Very little signs of anything.  Slower swims (competitive swimmer), slowed growth, one bit of blood twice with a bm but she was a girl at puberty age so everyone assumed spotting.  Then she started every so slowly losing weight.  To the point it wasn't noticeable on a daily basis.  Then came her first flare.  Diarrhea hit and we assumed stomach bug, then food poisoning.  Pediatrician told us to see a GI within the next 3 months.  I asked for a finger prick to check hgb and she was at 8.  Rush appointment with GI that day and he sent us home with prep instructions for scopes three days later.  The next day she an admitted, her hgb was 4 and she was severely malnourished.  Blood transfusions, TPN, IV steroids.  First night in the hospital she was moved to ICU and was fighting for her life. Even the GI said it was shocking how sick she was given she walked into the hospital carrying her 40 pound backpack on her back with a big smile.  They couldn't perform scopes until they got her stable.  Upon scope, the doctor told us her colon was one of the worst we had ever seen and that we would be lucky to leave the hospital without surgery.  

So yeah, that was my brush with un treated disease. 

I am known as the diet and food freak around here.  With my second Crohns daughter we were even toying with the idea of controlling her disease with diet and EEN alone.  We got her to remission within 5 weeks of EEN and her FC was 51.  Introduced 20% food of a VERY controlled diet...fruits and veg, very few whole grains, no sugar, no animal protein, no dairy.  Her last FC was 256.  Even though she had been on Methotrexate for 13 weeks.  So if the Methotrexate plus diet can't handle the disease I highly doubt diet alone could. 

I do however, believe that the diet my girls are on helps to keep things in check (that 256 might have been a lot higher on the SAD) and has extended the time O has been able to stay on Remicade flare free.  I also keep them on the best possible diet to avoid any ill effects from the drugs on their organs etc.


----------



## Pilgrim

After we did a 6 week round of formula - we decided (not with approval) to drop everything and do strict SCD diet (the first week is mostly liquid- bone broth, organic cider, natural gelatin, and the like). I did it by the book. She was bleeding within two weeks. 

What you are thinking of for your son, believe me, a lot of us have also tried. I have not heard of one parent saying that diet has put their child into remission. Someone can correct me if I'm wrong. 

I understand the need to try it and totally empathize. I would worry though, since he already has an abscess, that you may end up with a hospitalization if you don't get things under control first. It's not really a home remedy disease, but I think a good healthy diet can help build strength. Maybe there is a balance there you can achieve.


----------



## Misty triplett

I would never go against what his dr advised I was just curious because I hear so many people and know several people who manage their crohns through diet alone. I was hoping that someday my son could be able to as well but it sounds like it can be tougher for people diagnosed as a kid. 
I understand this disease is very individualized as well.


----------



## Pilgrim

It is very individualized. One of the hardest things I heard when I got the "call" from her GI was that he could not give me any road map to the progress of her disease. The best he could do was to say that one year seems to follow the pattern of the previous year for each individual. I'm not even sure if that's true yet. I guess time will tell.


----------



## Clash

Also, you need to take into account that for a long time, the treatment of CD was geared toward treating symptoms. So when symptoms abated the patient was considered in clinical remission. Now, research has proven that full mucosal healing is warranted for long stable remission.

So there are a number of people that through diet are able to manage or abate symptoms but the disease is still simmering away. There may be people who have deep stable remission with full mucosal healing proven by imaging, scopes and biopsy. But there are probably more that are just controlling symptoms with diet alone. Even simmering inflammation can lead to serious damage.


----------



## Misty triplett

How is the mucosal healing best achieved?


----------



## Jmrogers4

Depends once whatever is causing the inflammation is under control then the body has time to heal.  For us that was remicade. Once we were able to relieve the inflammation and its cause his intestines were able to heal and allow his body to do what it's supposed to do.  It still took a while after inflammation was gone for healing to be complete.  In hindsight the difference in his health has been night and day since before remicade.  He says he didn't realize what he felt wasn't normal.


----------



## Misty triplett

Jmrogers4 said:


> Depends once whatever is causing the inflammation is under control then the body has time to heal.  For us that was remicade. Once we were able to relieve the inflammation and its cause his intestines were able to heal and allow his body to do what it's supposed to do.  It still took a while after inflammation was gone for healing to be complete.  In hindsight the difference in his health has been night and day since before remicade.  He says he didn't realize what he felt wasn't normal.



Would you say to be complete it was just time? Or foods as well?
I have already seen a big difference in his energy after one dose of remicade.
He seems to tolerate most foods and doesn't get diarrhea.abdominal pain seems to remain at a 1 and hasn't changed for a few weeks. This disease came on so fast for us. The only indicator prior to this initial flare was he did tell me about canker sores in his mouth, he didn't tell me they didn't go away and I just assumed they did. Energy still seemed good though and he continued with his club soccer. February was what we thought was a stomach bug going around and he was diagnosed by March now here we are in may and I'm still trying to grasp it all.


----------



## Jmrogers4

My son was fairly asymptomatic, still continued with all his sports (football, baseball, skiing) and activities, BM 1-2 a day.  He was never hungry and only ate small amounts but there wasn't really anything that set him off as far as foods, I think he learned to live with a certain level of pain and thought that was normal, he would have never said his was above a 1 but as it was pointed out to me that since it becomes a normal thing for them a 1 could really be a 4-5 in someone else not dealing with IBD.  Pain tolerance is increased.  Jack broke his foot a few years ago in the morning went all day and even ran on it for 2 hours in football practice and told me when he came home his foot has been bothering him all day and it hurt a little. Doctor was surprised when he said it wasn't that painful and when I said he has Crohn's he said that explained it - he would have a high pain tolerance.
I would say at this point it is complete, we've talked about doing a pill cam to check and I'm sure it will come up in the next year but to go from minuscule growth and no weight gain over several years to 7" and 40 pounds since starting remicade.  Weight increased about 10 pounds in the first 3 months and height started to take off after about the 5th month.  His appetite increase was immediate, he went from hardly eating to normal teenage boy eating.  Even energy took a big jump while he was doing all his activities he was making it through them but it wasn't until I was able to look back and see the difference between then and now, the moodiness that I attributed to teenagedom was most likely due to low levels of energy but just another thing he learned to live with (I think actually eating also helped with energy levels).
He has 1 BM a day like clockwork, normal formed, no urgency.  We try to eat pretty healthy but he's a teenage boy and I know they go out to fast food once a week for lunch but I really don't worry about what he eats too much anymore.  He really is just thriving he is not even the smallest one in his group anymore.
Just like when you know in your gut something is wrong, it just feels right.  I'm still always looking for those little signals that something is off.  His GI jokes about how he could be the poster boy for remicade working as the difference over a year has just been astounding.


----------



## Misty triplett

Jmrogers4 said:


> My son was fairly asymptomatic, still continued with all his sports (football, baseball, skiing) and activities, BM 1-2 a day.  He was never hungry and only ate small amounts but there wasn't really anything that set him off as far as foods, I think he learned to live with a certain level of pain and thought that was normal, he would have never said his was above a 1 but as it was pointed out to me that since it becomes a normal thing for them a 1 could really be a 4-5 in someone else not dealing with IBD.  Pain tolerance is increased.  Jack broke his foot a few years ago in the morning went all day and even ran on it for 2 hours in football practice and told me when he came home his foot has been bothering him all day and it hurt a little. Doctor was surprised when he said it wasn't that painful and when I said he has Crohn's he said that explained it - he would have a high pain tolerance.
> I would say at this point it is complete, we've talked about doing a pill cam to check and I'm sure it will come up in the next year but to go from minuscule growth and no weight gain over several years to 7" and 40 pounds since starting remicade.  Weight increased about 10 pounds in the first 3 months and height started to take off after about the 5th month.  His appetite increase was immediate, he went from hardly eating to normal teenage boy eating.  Even energy took a big jump while he was doing all his activities he was making it through them but it wasn't until I was able to look back and see the difference between then and now, the moodiness that I attributed to teenagedom was most likely due to low levels of energy but just another thing he learned to live with (I think actually eating also helped with energy levels).
> He has 1 BM a day like clockwork, normal formed, no urgency.  We try to eat pretty healthy but he's a teenage boy and I know they go out to fast food once a week for lunch but I really don't worry about what he eats too much anymore.  He really is just thriving he is not even the smallest one in his group anymore.
> Just like when you know in your gut something is wrong, it just feels right.  I'm still always looking for those little signals that something is off.  His GI jokes about how he could be the poster boy for remicade working as the difference over a year has just been astounding.




I am glad he has done so well.  I suspect my son will have the same outcome with remicade, atleast i hope so.  After 1 treatment i see a big change so I pray it gets better and better.
Did your son continue with sports?
My son is fighting so hard to get back to soccer.  He is so athletic and sports is so important to him.


----------



## Jmrogers4

Yes, he continues with sports.  He ended up lettering in skiing this year and is working out and lifting weights daily.  It's nice seeing muscle instead of the emaciated body of previous years.
I wish we had done remicade earlier but can't change the past as he really lost a year sports wise when it was really important (9/10th grade) so instead of playing varsity next year he will most likely be playing JV as an 11th grader but he is okay and is just happy to be a part of the team and playing and honestly though I wouldn't say it to him I'm glad he will be playing JV although he has grown a ton he is still physically behind but then who knows what the next year will bring as far as growth maybe he will catch up.  He is currently 5'8" and 130 pounds the same as his just turned 14 year old brother and Jack will be 16 in July, we know prior to starting remicade that he was 2 years behind in bone age


----------



## Misty triplett

Jmrogers4 said:


> Yes, he continues with sports.  He ended up lettering in skiing this year and is working out and lifting weights daily.  It's nice seeing muscle instead of the emaciated body of previous years.
> I wish we had done remicade earlier but can't change the past as he really lost a year sports wise when it was really important (9/10th grade) so instead of playing varsity next year he will most likely be playing JV as an 11th grader but he is okay and is just happy to be a part of the team and playing and honestly though I wouldn't say it to him I'm glad he will be playing JV although he has grown a ton he is still physically behind but then who knows what the next year will bring as far as growth maybe he will catch up.  He is currently 5'8" and 130 pounds the same as his just turned 14 year old brother and Jack will be 16 in July, we know prior to starting remicade that he was 2 years behind in bone age




That makes me happy to hear that he is doing so well.  through MRI i believe my sons bone age is on target although he was such a fit slim kid to begin with the 20 lbs he lost at the initial flare really showed.  he's gained a few pounds back and sustaining so i hope our next remicade infusion next week shows more gain.  He has a pretty good appetite at this time and I hate telling him no to everything and let him have something here and there that he probably shouldnt.  Let him have a slice of pizza for the first time in months.  didnt seem to cause any tummy issue, then you feel guilty for letting him have it.
Is that tough for your son to be the same growth rate as his brother?


----------



## Jmrogers4

A little, but so many people think they are twins now they just have fun playing up that angle.  It was really bad when his brother was really starting to pass him up noticeably.  For example going out to dinner and the waiter would bring Jack's drink in a kids cup and my other son in a regular glass. This was when they were 14 and 12 so just before we started him on remicade which was one of the reasons we really started pushing and saying that we have to be missing something.


----------



## Misty triplett

Jmrogers4 said:


> A little, but so many people think they are twins now they just have fun playing up that angle.  It was really bad when his brother was really starting to pass him up noticeably.  For example going out to dinner and the waiter would bring Jack's drink in a kids cup and my other son in a regular glass. This was when they were 14 and 12 so just before we started him on remicade which was one of the reasons we really started pushing and saying that we have to be missing something.



 I am so glad for him that was the piece.  I hope remicade works just as well for us.  You worry so much about your kids in a regular situation, this is just tough.  
I will continue to hope for a cure soon...  do you ever follow the MAP vaccine fundraisers?


----------



## Jmrogers4

I do.  I personally think there are so many versions of this disease that we just don't know yet and for us there is such a strong genetic component with his dad also having crohn's I think that MAP may indeed be a Crohn's trigger in some but not everyone.  He just has so many of the gene mutations for Crohn's that it was almost inevitable (at least that helps with the mommy guilt)


----------



## Misty triplett

Jmrogers4 said:


> I do.  I personally think there are so many versions of this disease that we just don't know yet and for us there is such a strong genetic component with his dad also having crohn's I think that MAP may indeed be a Crohn's trigger in some but not everyone.  He just has so many of the gene mutations for Crohn's that it was almost inevitable (at least that helps with the mommy guilt)



Such a strange thing... Neither my husband nor myself neither of our parents or any grandparents have  iBD so I feel like his chances were so slim, making mom guilt worse because I feel like something I did caused it like pills or meds or something 
So heartbreaking


----------



## Jmrogers4

I don't think it is anything we did/didn't do but I know what you mean but that goes back to my there must be different versions.  I truly hope that MAP turns out to something that is in fact a cause and a cure/vaccine can be found maybe it will even lead to discovery of other causes which in turn can lead to cures.


----------



## my little penguin

He still may have tons of crohns genes
We did 23&me for DS 
No family history of Ibd or crohns
DS had 149 snps associated with crohns
Including nod2 so no avoiding per GI 
Even without a family history per say


----------



## Misty triplett

We just sent his 23 and me kit off today. 
Hope in some small way it helps with research


----------



## my little penguin

You get results in about 4 weeks .


----------



## Misty triplett

I wanted to ask parents again who has or has not the specific carbohydrate diet or LDN for their kids.
My sons GI suggested SCD diet during initial appointment when he was diagnosed. I didn't know anything about this disease and had no idea what questions to ask. I felt like I had to make such a huge decision in a instance. GI said he had children patients that have had success on the diet but again I'm not sure if this was in conjunction with meds. I've heard from a mom her daughter did great with SC diet and LDN alone and hasn't had anymore symptoms in over a year or required any other meds.
My son is about to start his 2nd dose of remicade but I feel like I didn't even try other options prior to starting meds, mostly due to lack of understanding. 
I wish their was a manual on how to handle this.


----------



## Farmwife

Hi, my girl is 6. She tried ldn after being dx at three but it wasn't enough to help her.
I looked into scd diet but it was too restrictive and lots of stories in how parents had a hard time keeping weight on their kids.


----------



## my little penguin

I think you need to try to be ok with your decision and hope the med works for him.
Some are not given a choice of drugs or time to research since their kids are too sick .
Some wish they could have a choice to use remicade or other biologics but different countries have different rules /limitations
Other times kids try drug after drug only to fail each one of them slowly.

We would all like to be able to choose a magical non. Drug diet or supplement or even weaker drugs than our kids are currently on.
But at the end of the day having a drug that works for your kid and having healthy intestine as well as kid is the key ( million dollar prize).

Scd has worked in some kids but most lose weight and it's not strong enough.
LDN alters the brain chemistry to trick the brain to produce more dopamine which is suppose to reduce inflammation . It has proven success in kids who have mild disease and just need a nudge to get healthy . We did not chose LDN due to changing brain chemistry 
Jmrogers used it for her son but still needed to switch to remicade to get to remission/growth.
Farmwife aslo used it for her Dd -same thing had to switch .

You need to look forward and educate yourself as much as possible so if there are more decisions to be made you can make informed decisions ( not that the disease doesn't choose for you most of the time anyways  )


----------



## Misty triplett

How do you even know in the beginning of the diagnosis how serious it is? The GI never specifically said is it was a mild/mod/severe he just asked if we wanted to start on prednisone or formula diet. My son refused the formula diet so we started steroids then methotrexate. 
I again just felt backed into a corner and had to make a decision without having any idea what was going on. Since the fitsula formed we had to then switch to the remicade and I keep wondering if I had started the SC diet right away if the fitsula would not have started.
I would say weight loss was a huge concern of mine and the restrictive diet felt way to difficult at the time.
The more I learn the more I see how many suggestions and options there are and it's so tough to make a decision for him.
I keep hoping and praying for a cure.
I shared the MAPcrohnsvaccine.com on my Facebook to hopefully raise money or awareness just in the hopes that this may offer a possible cure to our kids.


----------



## my little penguin

Kids tend to be moderate to severe 
Fistulas move you way out of the mild range .
There are pcdai ratings 
Chosing a therapy for mild disease typically does not tend to stop the disease from progressing . The big guns are needed for that.
Unlike adults kids disease changes over time and tends to get worse and affect more of the intestine 
So be glad you have the opportunity to try a more advanced med like remicade or even Mtx.
A few years ago mortality rates for kids were high with Ibd.
The only drugs they had was prednisone prednisone and more prednisone .
I get that your angry and grieving we all went though it .
Hindsight is 20/20 but looking back will not help you move forward .
Fistulas need a strong med 
Fingers crossed it actually works for him


----------



## Jmrogers4

Yes MLP is correct we used SCD and LDN at the same time.  LDN takes a *LONG* time to become effective if it's going to and a lot get worse before they get better which is what happened in our case which is why we tried SCD along with it.  It was a long summer where he felt miserable to do much.  He started feeling better about 3 months in but it took a full 8 months for him to really feel well and achieve remission and then it only lasted a few months (he did put on weight and grow an inch but that was helped with EN).  Getting him to eat was a struggle as he just did not feel hungry (personally I think that was a side effect of the LDN - lack of appetite).  We had 4 months where he felt really fantastic and then he developed a c-diff infection which led to a flare and the LDN either wasn't enough to pull him out quickly who knows if it would have worked if we had the time to wait but at that point he was 14 1/2 and we didn't have time to mess around.  Having moved to remicade at that point I can tell you at least for us remicade worked far better and faster.  I'll post some photos in an album on my profile page (just click my name in avatar box to go there) that will show you the difference for us on remicade.  Whenever I look at the pictures I feel better about the decision to move on to remicade.


----------



## my little penguin

http://www.cincinnatichildrens.org/WorkArea/DownloadAsset.aspx?id=87937

The manual
Extremely old so the med recommendations have changed a lot but you get the idea


----------



## my little penguin

https://improvecarenow.org/webfm_send/55
More guidelines


----------



## my little penguin

http://mobile.journals.lww.com/jpgn....aspx?year=2010&issue=02001&article=00001#ath


----------



## Pilgrim

We tried SCD. Did it by the book. She was an intestinal mess in a few short weeks. 

What you could try that might work is to research and begin an SCD diet while your son is on Remicade. Then you can see what it is all about , the theory behind it, learn how to use the diet. It may very well prolong remission while he is on Remicade or get there sooner. If you did that then you at least would know how it works, what it involves - without throwing out the medication that will hopefully be working very soon for your son.

I don't know about LDN as it was never an option for us.


----------



## pdx

My daughter E was quite sick by the time she was diagnosed last December.  My husband and I researched a lot in the first week after diagnosis, about both traditional and non-traditional treatments, and were happy with our doctor's recommendation to start Remicade immediately.  When E didn't respond to the Remicade right away, we decided to add SCD.  Like Pilgrim, we did it by the book for 3 weeks.  My daughter's external symptoms (abdominal pain and diarrhea) decreased markedly with the diet, but her inflammation markers (sed rate and CRP) stayed sky high, and she lost weight to the point of being dangerously underweight.  We ended up having to add NG-tube feeding, steroids, MTX, and antibiotics (to fight an abdominal infection), and with all that, E finally started gaining weight, and her sed rate and CRP have finally dropped to normal levels in the last month.  

As she came off the NG-tube, we tried at first to stick to an SCD-like anti-inflammatory diet, but I just don't think it's the right diet for her.  Every time we tried to add things beyond the introductory foods, she would have cramping and diarrhea.  When we finally decided to try adding some non-SCD foods like sourdough bread, oatmeal, and potatoes, she's done well with them.  

So that's a long way of saying that SCD didn't work for my daughter.  But I'm not sorry we tried it, since I do think that there is a dietary component to healing.  If you decide to try SCD, though, I'd do it as a supplement to your son's medicines, not in place of them.


----------



## Misty triplett

http://crohnsmapvaccine.com/literature-supporting-hypothesis-that-map-causes-crohns/

I thought I would share this link if any of you are interested in showing this study to your childs GI
I am taking this to my sons GI at his next visit in a couple weeks.
In any hopes that this may help I am willing to open the dialogue.  His GI is pretty open minded and driven to finding a cure as well through his own trials with fecal transplants.
Being open minded is difficult in the medical world I am sure but if there is any chance of this helping I will atleast discuss with the GI


----------



## Mr chicken

Misty is he feeling any better ?
When do you get the next infusion and when do you see the Gi next ?


----------



## Misty triplett

The infusions have helped him a lot
We go again in June to see GI and get next infusion


----------



## Misty triplett

I received the info back for IBD23 and me research but have no idea how to understand.. any suggestions?


----------



## Pilgrim

H is too young to participate in the study, but I have heard from other parents that for a small fee you can send the results to a lab for interpretation. 

I have no idea how to tag. MLP (aka mrchicken)?


----------



## Maya142

You can use Promethease for $5. They import the data from 23 and me and then interpret it.

https://promethease.com/ondemandagreed


----------



## trinity1913

Is there a link (or how strong is the link) between anxiety and crohns? I have all of these people giving me parenting advice, and they are pushing me towards anxiety. That doesn't seem to fit AT ALL for my little girl. It is making me crazy.   Unfortunately, it is family that I can't just shut down right now, since I love them even with all of the parenting "advice".

Also, does anyone else's child have headaches, more than would be normal at this age? Is abdominal migraine a possible alternative diagnosis? (We have more than just pain, there are physical symptoms like bm patterns also).


----------



## Misty triplett

trinity1913 said:


> Is there a link (or how strong is the link) between anxiety and crohns? I have all of these people giving me parenting advice, and they are pushing me towards anxiety. That doesn't seem to fit AT ALL for my little girl. It is making me crazy.   Unfortunately, it is family that I can't just shut down right now, since I love them even with all of the parenting "advice".
> 
> Also, does anyone else's child have headaches, more than would be normal at this age? Is abdominal migraine a possible alternative diagnosis? (We have more than just pain, there are physical symptoms like bm patterns also).


My son has suffered from migraines for years long before crohns showed up. He seems to have them worse now especially after physical activity. I'm not sure if the inflamation causes dehydration leading to migraine. 
And I'm not sure if migraines were an indicator of crohns, who knows. 
I am having to get him on a daily preventative med to control the headaches. He does vomit when he had his migraines as well.


----------



## happy

trinity1913,
I don't have any suggestions regarding the headaches. But I do want to offer support to you regarding the 'anxiety' diagnosis from family members. 

My son, who is now a healthy adult, probably had Mastocytic Enterocolitis (ME) as a child although at that time he was not given that specific diagnosis. School staff, friends (who were health professionals), family members (also health professionals) and the first pediatric GI we saw all brushed off his symptoms of bleeding, strange bowel patterns, poor appetite, weight loss, pain, nausea, and fatigue as 'anxiety'. Now I have another family member who has anxiety severe enough that they require medication and therapy to treat it, so I am not discounting anxiety as a serious medical problem. However, the treatment for anxiety that may cause some digestive upset and the treatment for IBD that may get worse when one is anxious are very different; therefore, it is important to know which one you are dealing with.

One day when my son woke up with swollen fingers and toes in addition to his other symptoms, I absolutely insisted that he be seen again by another pediatric GI. After just having me complete a detailed questionnaire, the new GI was fairly certain of my son's diagnosis. He had a protein-losing enteropathy that the doctor thought was caused by an allergic-type response in his intestines to inhaled environmental allergens such as pollen. With the correct treatment, he was symptom-free within a year. (Fortunately ME is an IBD that is often cured with medication, unlike Crohn's and UC.)

So trinity1913, trust your mummy gut. None of the doubters have ever apologized for not recognizing what was happening to my son, nor for not supporting me (in fact, I was accused of being overprotective, and overstating the seriousness of his symptoms); but my adult son has thanked me several times for persisting in my advocacy for him so that he could grow into the fine young man that he is today.

There are many here on the forum that have been in your shoes--many the energy of our support help you to continue to seek health for your child. Good luck.


----------



## trinity1913

happy said:


> trinity1913,
> I don't have any suggestions regarding the headaches. But I do want to offer support to you regarding the 'anxiety' diagnosis from family members.
> 
> My son, who is now a healthy adult, probably had Mastocytic Enterocolitis (ME) as a child although at that time he was not given that specific diagnosis. School staff, friends (who were health professionals), family members (also health professionals) and the first pediatric GI we saw all brushed off his symptoms of bleeding, strange bowel patterns, poor appetite, weight loss, pain, nausea, and fatigue as 'anxiety'. Now I have another family member who has anxiety severe enough that they require medication and therapy to treat it, so I am not discounting anxiety as a serious medical problem. However, the treatment for anxiety that may cause some digestive upset and the treatment for IBD that may get worse when one is anxious are very different; therefore, it is important to know which one you are dealing with.
> 
> One day when my son woke up with swollen fingers and toes in addition to his other symptoms, I absolutely insisted that he be seen again by another pediatric GI. After just having me complete a detailed questionnaire, the new GI was fairly certain of my son's diagnosis. He had a protein-losing enteropathy that the doctor thought was caused by an allergic-type response in his intestines to inhaled environmental allergens such as pollen. With the correct treatment, he was symptom-free within a year. (Fortunately ME is an IBD that is often cured with medication, unlike Crohn's and UC.)
> 
> So trinity1913, trust your mummy gut. None of the doubters have ever apologized for not recognizing what was happening to my son, nor for not supporting me (in fact, I was accused of being overprotective, and overstating the seriousness of his symptoms); but my adult son has thanked me several times for persisting in my advocacy for him so that he could grow into the fine young man that he is today.
> 
> There are many here on the forum that have been in your shoes--many the energy of our support help you to continue to seek health for your child. Good luck.


Thanks so much for that. I doubt myself most of the time, but will keep pushing through till we figure out what is wrong. I appreciate the support


----------



## trinity1913

Hello...

Bloodwork has started coming in, and some of the stool work.  The Dr. said all is normal, so far. Results below - anything stand out other than "in range"?  Only the eos and lymph% are a little high, and what I found online says as long as the wbc is OK, that doesn't matter so much (basically - it was more complicated than that, but they weren't scary high)

Test                   Range                   Results
TTG IgA              <20 UNITS             4 
IgA                     35-200 mg/dL        107 
CRP                    0.0-8.2 mg/L          <0.1
Sed Rate             0-20 mm/Hr            2
Sodium               136-145 mmol/L       141 
Potassium            3.5-5.1 mmol/L        5.1 
Chloride               95-110 mmol/L        107 
CO2                    23-29 mmol/L          23 
Glucose               70-110 mg/dL          85 
BUN, Bld               5-18 mg/dL            18 
Creatinine             0.5-1.4 mg/dL         0.6 
Calcium                8.7-10.5 mg/dL       10.1 
Total Protein         5.9-8.2 g/dL           7.1 
Albumin                3.2-4.7 g/dL           4.4 
Total Bilirubin        0.1-1.0 mg/dL         1.2 
Alkaline Phosphatase 93-309 U/L          208 
AST                    10-40 U/L               33 
ALT                     10-44 U/L              16 
Anion Gap             8-16 mmol/L           11 
WBC                    4.50-14.50 K/uL       6.09 
RBC                     4.00-5.20 M/uL       4.71 
Hemoglobin           11.5-15.5 g/dL        13.3 
Hematocrit            35.0-45.0 %           38.2 
MCV                     77-95 fL                81 
MCH                    25.0-33.0 pg           28.2 
MCHC                  31.0-37.0 %            34.8 
RDW                    11.5-14.5 %           12.2 
Platelets               150-350 K/uL          313 
MPV                     9.2-12.9 fL             9.6 
Gran #                 1.5-8.0 K/uL            1.9 
Lymph #               1.5-7.0 K/uL            3.3 
Mono #                 0.2-0.8 K/uL            0.5 
Eos #                   0.0-0.5 K/uL            0.4 
Baso #                 0.01-0.06 K/uL         0.02 
Gran%                  33.0-55.0 %            30.5 
*Lymph%           33.0-48.0 %             54.8 *
Mono%                 4.2-12.3 %              8.0 
*Eosinophil%       0.0-4.7 %                6.4 *
Basophil%             0.0-0.7 %                0.3


----------



## crohnsinct

Nothing screaming at me.  Nice inflammation marker numbers and nice Hematocrit and HGB.  That said, one of my girls doesn't show her inflamatino in her blood results. 

What stool studies are back?  Fecal calprotectin?  Don't just take normal, get the actual number.


----------



## trinity1913

Don't have the fc back yet.


----------



## trinity1913

What I posted is all I have seen so far. She said some stool is back, none showing inflammation, but I have no idea what is blood and what is stool except that the cbc and electrolytes are blood, lol. They may be holding all stool for fc, if none of the stuff above is stool. Those should be another 10 days or so.


----------



## Jmrogers4

Doesn't look like any stool results, but like CIC says nothing stands out. My son's blood doesn't ever show anything even when we know inflammation is going on. We waiting on FC results here as well. I hate waiting for results, no patience here even when I'm 99% certain they are going to be fine.


----------



## Mr chicken

EOS will be high if he has any pollen allergies 
My kiddo has an 8.0 in the spring/summer 
No biggie


----------



## Misty triplett

My son had started getting very itchy bumps on chest back and face kinda look like mosquito bites they go away after a few hours. He's on remicade and methotrexate.
Any ideas what this might be from?


----------



## Mr chicken

Take pictures and see a dermatologist


----------



## trinity1913

Mr chicken said:


> EOS will be high if he has any pollen allergies
> My kiddo has an 8.0 in the spring/summer
> No biggie


We got the fc's in. Numbers were very good, 23. No parasites, e coli, etc. Normal fat content. I don't know what to think.


----------



## Pilgrim

Well, that's a good number!

I read here from another parent that FC can be unreliable with small bowel disease but much more reliable when the inflammation is in the colon. DustyKat was it you?

Anybody else have more on that?


----------



## crohnsinct

The way our GI explained it to me is that FC is just less reliable for small bowel disease but that just means that the numbers don't raise as high  (ie: colonic in the thousands with a flare but small bowel in the hundreds) but in majority of the cases if you have small bowel disease they will at least be close to the upper limit if not over.  

I would be very encouraged with that number.  I forget off hand how old she is but younger than 10 they typically look for less than in the 160's so 23 is a very good number.  

It isn't until over 10 that they look for less than 50 and even then it is a good number.

P.S. re: headaches...yes my younger daughter has issues with headaches  One summer migraines with vomiting often.  Early on in our journey we were told abdominal migraines but obviously that wasn't the case.  But her FC was over 1,000.


----------



## GirlwiththeCurl

Hi!

I am Hilary, and I have a six-yr-old daughter who has been having diarrhea, sometimes bloody, and stomach and back pain since the end of March.  She had been through a battery of blood and fecal tests to rule out infectious causes and cystic fibrosis, but everything has been normal.  She did have rather elevated liver enzymes, which sent us to a pediatric liver specialist, but those were from a blood draw taken about ten days after she had a terrible stomach virus (the whole family got it, so I am sure it was a virus, but she had much worse time of it than the rest of us, and ended up getting rehydrated by IV).  The liver specialist sent her for an upper GI endoscopy, sigmoidoscopy, and liver biopsy.  There was visible ulceration in her colon, but everything else looked fine, though the doc took biopsies during both scopes.  We are waiting on biopsy results for a diagnosis...I hope.  The doctor (liver specialist) has not really spoken to me at all.  At my daughter's first appointment she (the doc) started talking in front of her (my daughter) and upset her so badly she (the doc) said she would talk to me by phone, but never did.  I talked to her nurse several times but never the doc again.  So... My questions are these: is ulceration in the colon diagnostic of ibd? Are elevated liver enzymes typical in IBD? Also, we have a follow up appointment coming up where presumably I will actually get to talk to the doctor, and I don't even know what to ask or expect.  What questions would you suggest I ask? I really feel out at sea.


----------



## Clash

I wonder why the doc only chose a sigmoidoscopy as that doesn't visualize the entire colon nor the last part of the small bowel(which is a common place for CD). Also has she had a fecal calprotectin stool test? It can determine inflammation levels in the GI tract alone although it can't necessarily say the inflammation is CD.

Hopefully the liver specialist will have some answers but an appt with a GI specialist might be advantageous.


----------



## GirlwiththeCurl

I went back and checked the second stool test and it was for pancreatic elastase (this was initially very slightly lowered, but both my pediatrician and the liver doc said it meant nothing, but perhaps that is why she rechecked them?), so I will ask about fecal calprotectin.  I don't know the reasoning behind the sigmoidoscopy.  The nurse relayed to me that the doctor had ordered the scopes after I called when L had three pretty bad days and I was concerned, and I didn't (and don't) know what is a sensible course of testing for diagnosing with her symptoms.  The liver specialist is part of a larger pediatric digestive health clinic, so I may be passed on to a doctor who specializes in ibd.  If it is ibd.  I am kind of assuming it is, but maybe I am wrong.


----------



## Clash

If her digestive issues continued seeing a GI in the digestive clinic as well as the liver specialist may help to cover all the bases.

My son has never had liver involvement with his CD. I'm going to tag a couple parents:
Farmwife Mr Chicken maya142 crohnsinct jmrogers4

I'm sure others will be along as well. And that you find more answers with biopsies or further tests. Sending hugs!


----------



## Maya142

I think you'll have to wait to see what the biopsies show. There also might be more tests - to visualize the small bowel (an MRE or pill cam) and since your daughter hasn't had a full colonoscopy, probably that at some point.

Can you have your daughter wait in the waiting room while you talk to the GI? Or bring a distraction - a book, a toy, an ipad (with headphones) so that she is not focusing on the conversation and getting upset.

My daughter did not have issues with liver enzymes so can't really comment on that.

Good luck!! Wish I had more helpful advice.


----------



## trinity1913

GirlwiththeCurl said:


> Hi!
> 
> I am Hilary, and I have a six-yr-old daughter who has been having diarrhea, sometimes bloody, and stomach and back pain since the end of March.  She had been through a battery of blood and fecal tests to rule out infectious causes and cystic fibrosis, but everything has been normal.  She did have rather elevated liver enzymes, which sent us to a pediatric liver specialist, but those were from a blood draw taken about ten days after she had a terrible stomach virus (the whole family got it, so I am sure it was a virus, but she had much worse time of it than the rest of us, and ended up getting rehydrated by IV).  The liver specialist sent her for an upper GI endoscopy, sigmoidoscopy, and liver biopsy.  There was visible ulceration in her colon, but everything else looked fine, though the doc took biopsies during both scopes.  We are waiting on biopsy results for a diagnosis...I hope.  The doctor (liver specialist) has not really spoken to me at all.  At my daughter's first appointment she (the doc) started talking in front of her (my daughter) and upset her so badly she (the doc) said she would talk to me by phone, but never did.  I talked to her nurse several times but never the doc again.  So... My questions are these: is ulceration in the colon diagnostic of ibd? Are elevated liver enzymes typical in IBD? Also, we have a follow up appointment coming up where presumably I will actually get to talk to the doctor, and I don't even know what to ask or expect.  What questions would you suggest I ask? I really feel out at sea.


Sometimes I bring a friend to appointments that can take my (same age) daughter to go play or whatever so she doesn't hear everything. She gets scared too.  I hope you get results (and a phone call) soon!


----------



## crohnsinct

From what I understand liver issues are caused more from the IBD meds than from the disease itself so it isn't unusual to not have liver involvement at diagnosis. 

My daughter happened to have some liver and other issues at dx but the docs explained that it was more from the chronic mal nutrition than the Crohns itself. How is your daughter's weight and growth.  Kids with IBD typically will fall of their curve.   

Unfortunately, you are finding it is a lot of hurry up and wait with finding a dx for gi issues. I can not tell you the amount of times I hear the word patience! 

I agree with the others, if they determine her issues are not from the liver, and the biopsies come out clean, then further evaluation is warranted.  

A good place to start would be the fecal calprotectin test.  Easy, noninvasive.  An elevated number there usually points to an organic rather than functional (IBS) issue.  It gives the doc more justification to move to scope or small bowel imaging to find the reason for the inflammation. 

Not sure how bad the ulceration was but during my routine cancer screening colonoscopy (I don't have IBD my daughters do) they found ulcerations also.  My biopsies came out clean.  So I guess it is possible to have ulceration without disease.  I would think just the diarrhea alone could cause that.  Oh and also when I had a particularly bad bout of diarrhea (induced by antibiotic use) I also had bleeding.  So hard to say.  

You were right to get it checked out and keep pushing until your girl feels better!  

Keep us posted.


----------



## GirlwiththeCurl

I know I am being impatient.  And I should be hearing about biopsy results soon.  No doubt I have done too much googling of symptoms, too.  :\

It is a good idea to bring someone with me.  I wish I had done it the first time, and maybe I wouldn't be wondering what is going on.  Or maybe this period of confusion is just normal, anyway.


----------



## crohnsinct

You are being totally normal!!!!  It is your child and she is suffering and you want answers!  Nothing more frustrating than waiting.  But fair warning...there is a lot of that around here.  

When did she have the scope and biopsy done?  At our hospital it only takes our doc a few days to get the biopsies back.  

Hint:  if you want to try to move things a long quickly and don't mind maybe having to pay for a test that the GI wasn't going to order, you could ask your ped to order the fecal calprotectin test now so if and when you get the GI referral you already have that done.  That test takes at least a week to get results back and nothing more annoying than waiting for a GI consult to have them just order a test that means more waiting.  This way you are ahead of the game:thumleft:


----------



## GirlwiththeCurl

L is an extremely picky eater, so much that we wondered if her issues were from bad diet alone.  When she was a baby she fell off the growth curve because she refused to eat.  She weighed 15 lbs 7 oz at 18 months, but that is when i discovered she would eat french fries and fed them to her three meals a day for the next six months and she started to grow.  She will eat more things now, but no vegetables and only a couple of fruits.  She is about 15% for height and 10% for weight now, so her bmi is okay.  She has lost a pound since our initial doctor's appointment for diarrhea in March, but for the most part she doesn't look or act particularly sick.  She just continues with diarrhea (3-6 times a day) and periods of stomach pain.

She had the scopes and liver biopsy last Tuesday, so i hope to hear something before the end of this week.  Our follow up is a week from today.  

I do not have a feel for the severity of the ulceration in her liver.  After the scopes the doc said her colon did not look healthy, and she was surprised we weren't seeing more blood in her stools, but she wouldn't speculate on a diagnosis because it was the biopsies that would provide the best information.  I think that is a very reasonable thing for a doc to say, but i am a know-all-the-possibilities sort of person.  

Thanks for everyone's support.  I appreciate it.


----------



## crohnsinct

OK stupid question here but was it a GI who did the scope and sigmoidoscopy?  Just asking because with both of my daughters our GI declared Crohns on sight.  Biopsies were just a technicality.  My oldest daughter was severe so it was obvious but my younger one was pretty mild.  
Maybe your doc just wants to be extra cautious and sure...which is never a bad thing!

Her eating....hard to say there.  I think a lot of kids self limit their food choices not so much because their picky but the healthier foods bother them. Could be a good sign that she gained but she is also pretty young so hard to tell if the weight plateau is just hitting now. 

See?  Everything clear as mud with GI issues AND no two are alike. 

Sending lots of fast biopsy vibes your way!


----------



## Maya142

My daughter was pretty mild at diagnosis but even though there were ulcers through her colon (small ones) and at the end of her small bowel, they still would not call it Crohn's until the biopsies came back. It might just be protocol at some hospitals?? Not quite sure.

My daughter was also like yours when she was young - she would eat a few vegetables, but NO fruit at all. She said it hurt her belly. At the time, we thought she was just being picky, but now given how many issues she has with fiber, it really could have been related to that. She can now eat only VERY well cooked veggies and eats a lot of soups.

Nutritional supplements like Pedisure and Boost could help with weight gain, if you can get her to drink them.

Good luck!


----------



## Macgavock

Boy can I relate to this post.  I have just recently been diagnosed with crohns and mother-in-law has had small and large intestines removed due to crohns.  so my entire married life I've been familiar with Crohns.  my oldest daughterhad the soy milk allergy diagnosed at three months and has had  tummy issues ever since and my son is been diagnosed with coscocondritis and  has constant stomach issues also was stung by jelly fish before onset.   Now that I have been diagnosed it seems a logical jump to have kids tested, but I am nervous about what they will have to go through.  My diagnosis has been a bumpy road.


----------



## GirlwiththeCurl

Just dropping in to say that I will not hear results until Monday at the earliest. I called to ask for results but the pathologist who was going to review the results with our doc was out until Monday.  

Crohnsinct--i don't totally understand what the different levels of med school are, but L's doc has  completed a fellowship in pediatric gastroenterology.  So yes, she is a GI (and she is the one who did the scopes). But she specializes in liver disorders, or at least, she works in the liver clinic part of the digestive health clinic.  Actually, when I called about the results the rep I spoke with said she works with two different populations within the DOC, so she must have a broader range of practice than just liver problems.  I think there must be some sort of protocol for results at the hospital, especially if they have to review them with a pathologist.


----------



## GirlwiththeCurl

And L's doctor had a baby on Saturday.  Early.  (But the baby is fine, thank goodness.)  I called today and her nurse said there is  evidence of colitis and liver disease (autoimmune hepatitis) in the biopsies but that the doctor will call me to discuss and prescribe medicine. Meanwhile, we can get an appointment with another doc sometime in August.

I am not upset with the doctor, of course. But I feel kind of distressed. I don't feel great about starting a medication without a fairly long discussion with the doc.  But she just had a baby! Even when she calls I will feel like I can't take much of her time.


----------



## Mr chicken

Take your time on the call
Autoimmune hepatitis can mimic crohns
Hopefully the meds will help and your kiddo will be back to normal soon
Glad you have a dx


----------



## Clash

When the doc does call and go over everything you could ask for an email address so that you could present any concerns or questions you may need addressed? That way they could be addressed at her convenience and not crammed into a hurried convo.

We email all non emergent questions to our GI office but if it is something occurring in the moment or I feel needs attention we speak with the GI nurse and she gets back to us quickly.

I don't know, such a hard position to be in and I do understand where you are coming from. The other Dr she is to see will that be a GI could they get you in on a cancellation so they the GI could follow up on biopsies before meds were administered?


----------



## crohnsinct

Yeah, my daughters' GI is the head of the department at our hospital but he only sees IBD patients.  He has another doc on staff who handles the liver issues.  O need a liver biopsy sometime soon and her GI told us the liver doc would handle it.  He has plenty of training in it and can do it but best to be with someone who knows the liver issues inside and out.  I guess this is why he isn't hesitant to dx IBD on the spot.  He sees it all day everyday but if it were the liver..... 

My mother has auto immune hepatitis.  The drugs are very similar to IBD.  Immunomodulator and steroids. There is an interesting book "Curing Courtney"  I met the author and many people who used the protocol talked about in the book.  It is a slightly alternative method (nutraceuticals)  of dealing with Autoimmune Hepatitis but she is wonderful about speaking with people and giving advice on working with your GI and trying the protocol.  At a minimum it is just a good book to try to understand the ins and outs of the disease.  

I understand feeling bad about taking your docs time but she is obviously passionate about the care she delivers.  She wouldn't offer the call if she wasn't up to it.  Go ahead and take your time.  Love Clash's suggestion of asking for an email.  This is a difficult diagnosis and a lot to digest.  You can't be expected to start a medical regime based on a 10 minute phone call. 

:ghug:


----------



## Maya142

Is there no one covering her patients while she is away? I would imagine she'd be on maternity leave for a while? 

My daughter's pediatric rheumatologist was on maternity leave for 3 months and we saw two other docs in the practice during that time. The other docs were also the ones who started M on her first anti-TNF. It wasn't ideal not to have her doctor who knew her best starting treatment, but we couldn't very well wait 3 months and they did consult her rheumatologist via phone/email.


----------



## GirlwiththeCurl

Thanks for the responses, all. 

Clash--I think I will ask the doc how and to whom to address questions that I will no doubt have in the next few weeks, either via email or some other way.  Getting in to another doc on a cancellation would be great, but unfortunately it is a three hour drive for us and logistically it would be problematic, since a clinic trip takes all day. 
Crohnsinct--For some reason I was really unprepared for the dx of autoimmune hepatitis (though I was not happy about the colitis dx, at least I was expecting that, more or less). I mean, all the follow up liver blood work was normal (except that liver enzymes were still elevated, though much lower than initially).  I am really not eager to start giving my six yr old lots of steroids for a long time.  I will look into Curing Courtney, thank you.
Maya 142--yes, I just assumed that another doctor would be stepping in to cover for L's doc while she was on maternity leave.  Evidently not? I don't really understand how that could work. She will be back sometime in September, and as this is a long-term thing I guess in the scheme of things it is not a big deal.  Except for this just being the beginning for us, so it feels like a big deal.

Deep breath...  
Thanks again!


----------



## Maya142

It definitely does feel like a big deal. I would ask the clinic if anyone is covering, just to clarify. I just can't imagine that they're leaving all her patients without a doctor!! That just doesn't seem right!
Hope someone can get back to you soon - either your doc or someone covering so you can get your daughter feeling better!


----------



## Clash

We had that problem with C's last rheumatologist. She had her baby and was out for 3 mos with no one covering for her. We had to move on, we already had problems with her demeanor and not being able to have her available was the straw that broke the camel's back. C was a new patient at the time and we had only seen her once maybe twice.

Hopefully there is something in place to meet your needs and concerns while she is out. I do remember the kind of set adrift feeling when her nurse told us she wouldn't be available.


----------



## crohnsinct

Hmmm..I guess the first question is what did they mean by colitis?  Colitis just means inflammation of the inner lining of the colon.  You could have colitis due to many issues and not necessarily IBD (infectious colitis, allergic colitis etc).  So I would want to know whether or not they are still suspecting IBD and what exactly those colon biopsies showed.  If they are dx'ing her with UC then you are probably going to be treating with meds anyway and the upswing is the meds are the same ones used to treat AH.

When is the call scheduled for?  Can you maybe write out all your questions and send them to the nurse so she can forward to the doc?  This way the doc can prepare for the call a little better.


----------



## GirlwiththeCurl

Hoo doggy!

(Can you tell I am from Wyoming?)

I heard from the doctor yesterday.  In addition to AIH, L has primary sclerosing cholangitis.  The doctor said that the biopsies did not show specific evidence of UC or CD, but that inflammatory bowel disease is associated with both AIH and PSC and that she feels confidant L has early onset ibd.  Fortunately, L's liver shows only a little scarring, and is likely to respond well to meds.  We are starting Prednilosone, ompremazole, and Ursodiol and will add Imuran if L's blood work shows she can metabolize it.  I am hoping her liver enzymes will drop quickly so we can wean her off the steroids quickly.

Goodness.  My poor sweet daughter is either going to get used to needles quickly or be emotionally scarred. She had already been poked a lot and a couple of times have been pretty long and painful.  Any suggestions on how to make this easier?


----------



## Clash

Oh so sorry to hear that. I thought about PSC but with the IBD being up in the air I  thought it would possibly just add undue stress to mention it.

Ok so she might try buzzy bee. You can Google it. But there are several parents here that have used it, Mr chicken Farmwife. Some labs have their own and sometimes you have to self purchase. 

Also early own my son would ask for EMLA cream. So the glop on the EMLA cream where the needle stuck will be, cover it with clear tape, wait a few mins and then wipe clean and give the shot. The EMLA cream numbs the area.

Since my son was in remicade then injection mtx he got used to the sticks and doesn't ask for the EMLA any more. But he did say it made the needle stick pretty much pain free


----------



## Farmwife

Hidy ho, call ya tell I'm from Michigan. lol

My girl was dx at 3 but is now six. She also had to get use to needles...fast!!!!
We used the Buzzy Bee and then the Emla cream and now she uses a numbing spray.
As time has gone on she is now so use to it that she helps the nurses do it!

My girl also lives in the strange of "early IBD". 
I hope your child is feeling better soon.
HUGS


----------



## pdx

My 12-year-old uses EMLA (lidocaine) cream for every blood draw and IV.  It's been hugely helpful for her.  We've found that it needs to be on for at least 45 minutes to work well, so we put it on at home before appointments.  We apply it liberally, then cover the cream with saran wrap, then cover that with Coban.  

You can get 4% lidocaine cream over the counter, or 5% by prescription.  Both work well.

I hope your daughter starts feeling better very soon.


----------



## Pilgrim

Our daughter was diagnosed at three (with many months of blood draws before diagnosis).  We tried buzzy bee but it caused too much anticipation and stressed her out. In the end we just fought through it with no extra creams or numbing agents. 

She adjusted and is a "pro" now when it comes to the blood draws and her (now weekly) Humira injections. She counts through the pain (being 4yrs old it is like this 1,2,3,4,5,6,35,42...LOL). She always watches the needle. Quick is best for her psychologically.

I would definitely use a numbing agent for an IV though. They are big sticks for such little bodies. 

Each kid is different and with different pain thresholds. We noticed that when she was feeling her worst she was least able to cope with the needles. Although the reality is that they do get used to it all too quickly. 

I'm so sorry for you with the diagnosis. I hope you can find all the resources you need to understand the liver disease process and treatment, and that you take care of yourself too, so you can be strong.


----------



## Mr chicken

Ds started allergy shots at 4.5
At that age quick was better
Then he didn't need creams for a while
Just buzzy for iv sticks
But over the past year too many bad iv sticks ( multiple times without getting a vein)
And bad blood draws 
We went back to bringing Emma cream
Freezy spray and buzzy and letting him choose
Much better that way
A few good iv sticks goes a long way


----------



## Mr chicken

http://www.cgdassociation.org/doctorvisits.php

Article on reducing pain and fear of shots and needles


----------



## happy

Hello GirlwiththeCurl,
I am paging QueenGothel for you as her daughter was diagnosed with Primary Sclerosing Cholangitis and she may be able to give you some advice. I believe that her diagnosis may have changed, but QueenGothel is very knowledgable about the condition.


----------



## crohnsinct

Oh man!  Hugs:ghug: That is a lot to absorb.  For now I wouldn't worry about the IBD...deal with the here and now and what you know...the two dx's.  They are both tough ones.  Like I think I said before Imuran is used to treat both AIH and IBD so maybe you won't really have to cross the IBD bridge for a while.  

I would also be pursuing a second opinion. There is no harm in that and any confident doctor would welcome the added pair of eyes.  Sorry I don't know of the best hospital for childhood AIH or PSC but a google search will probably turn something up.


----------



## DustyKat

Pilgrim said:


> Well, that's a good number!
> 
> I read here from another parent that FC can be unreliable with small bowel disease but much more reliable when the inflammation is in the colon. DustyKat was it you?
> 
> Anybody else have more on that?


Better late than never? :eek2: 

Yes that was most likely me Pilgrim! 

Over the years I have seen the consensus go from FC not being a very good marker at all for small bowel disease to the more recent studies saying that small and large bowel are on an even keel when it comes to reliability. 

I still think there is quite a bit of divided opinion between GI’s though. The kids GI does his own comparisons using FC’s in line with scopes and based on what he is seeing he is of the opinion that FC results with small bowel disease don’t correlate at all well with scope and pathology findings. By that I mean he is getting normal FC results and abnormal scope findings. 

All that said, Matt’s recent FC and scope result matched, both abnormal. 

Dusty. xxx


----------



## crohnsinct

my daughters' gi also pulls fc and does scopes and imaging to see if they correlate and takes it from there. He said more often than not he does find fc correlates with small disease. 

Fwiw all t's disease is in t.i. And her fc also correlates with disease activity.


----------



## Cat26

Hi everyone.  I posted in the past and we are still waiting for answers for my daughter.  Paediatric gastroenterologist thought it might be Crohn's but endoscopy and colonoscopy were fine and she said there was only a little lymphoid hyperplasia in her small bowel (capsule test).  My daughter is now 18 so has been passed on to adult clinic (we are in Scotland).  Adult gastro has said he thinks we are looking at emerging Crohn's when he puts everything together.  Her calprotectin levels have been 133, 405, 900 and the last one dropped to 257.  She is suffering from low ferritin levels for the last 4 years and has constant mouth ulcers.  He said from capsule test done at kids hospital there was a small area of thickening in the small bowel but he doesn't know how significant this was.  Could it be possible she is having false calprotectin levels from taking Eseomprazole  (nexium)as this has been mentioned in the past.  She doesn't have a runny tummy but is always constipated, in pain and has been bleeding at times passing a stool (put down to fissures but never checked).  He said when we go back in six months he may trial her on steroids just for the bowel but is waiting till rheumatology have carried out their tests as she also now has a positive ANA antibody test.  Has lots of ongoing issues.   She also has Type 1 Diabetes (been told she has delayed emptying also), Chronic Fatigue Syndrome, POTS, Angio-oedema and too much histamine.  They keep bringing Crohn's up but no positive answers.  Looking for any advice possible.  Thanks in advance x


----------



## crohnsinct

Sorry your girl is dealing with so much.  High FC tests results are usually indicative of an organic issue rather than functional (think IBS).  High values do not always mean Crohn's though.  It could be from an infection, bacterial, viral, some celiacs although not all, NSAID use and a lot of the times Crohn's.  

I am surprised the adult GI saw those climbing results, they hit 900 and he didn't scope.  Curious that they went down like that.  Does she take any NSAID's that she may have stopped that would reduce the number like that?  NSAID's do not usually produce such a high number but maybe????  

If she tests again and comes out high, I would ask for some imaging starting with scopes.  I would want the doc to really know what they re dealing with.  In Cohn's, steroids are great at knocking down the initial inflammation but you would need a maintenance plan. I am not a fan of "throw steroids at it and see if it helps"...if it does then what?  Take steroids away and if it is Crohn's let the inflammation come back?  That isn't a sound plan.  

Good luck.  I hope she feels better soon.


----------



## my little penguin

To cic point
Spondylarthritis can cause sub clinical gi inflammation 
Not enough to be called crohns but enough to be there 
It can flare when joint flare and go away when joint pain does or run independently of each other
Steroids would also "fix" it without you know what you were fixing .


----------



## happy

Cat26,
I am wondering about the "too much histamine". 

There is an inflammatory bowel disease called 'mastocytic enterocolitis' where the diagnosis is obtained through special staining of the mast cells (this has to be requested when the biopsy is submitted) from a 'scope (usually a colonoscopy). It is thought that the disease is caused by mast cells releasing too much histamine in the bowel--it was described to me as "an asthma attack in the bowel". The treatment for it is to take antihistamines and mast cell stabilizers. 

I believe my son had this when he was a child although he had no staining of the biopsies and there was no name for the condition then; however, he did have a lot of nodular lymphoid hyperplasia. He was put on Sodium Cromoglycate for about a year and he has had no problems with it since! 

Here is some info about the condition: http://www.crohnsforum.com/wiki/Mastocytic-Enterocolitis

Some of the threads in the microscopic section of the forum discuss Mastocytic Enterocolitis (ME). http://www.crohnsforum.com/forumdisplay.php?f=258

As well, this condition can be part of a more serious syndrome, systemic mastocytosis. Because of your child's other conditions and symptoms, it may be worthwhile checking for both conditions. 
http://www.aaaai.org/ask-the-expert/mastocytic-enterocolitis.aspx

May you soon have more complete information and effective treatment for your child.


----------



## Cat26

Thanks for all the replies.

When paed consultant saw rising calprotectin she carried out two endoscopies, two colonoscopies, a MRI of small bowel and one capsule endoscopy (over a year ago now) but nothing to be found except some lymphoid hyperplasia in small bowel (which adult consultant said was some small thickening in small bowel).  

She has not been allowed any anti inflammatories as they found gastritis four years ago in her tummy which is why she is on Nexium.   She also has significant acid and non acid reflux.   

She is being referred to a specialist clinic for the histamine problem (I did ask if it was mast cell activitation disorder) as it can go hand in hand with POTS (postural orthostatic tachycardia syndrome).   She is on an anti histamine at the moment and has been since May.   She gets swelling to her face, lips, left knee, fingers and swelling over rib area.  

This is the first time her calprotectin has been checked since the level of 900 over a year and a half ago.    We have been told you can sometimes get a false high calprotectin with nexium but she has had four positive ones which seems strange.  The only difference from last time to this time is she is taking her heart tablets and the anti histamine.  

He said it may be worthwhile trialling her on steroids just for the bowel to see if it makes any difference but when he told us this it was before calprotectin result came back.  He had no explanation as to why it had dropped.   We don't see him again till February next year and have so many questions.  I would like her to stop her nexium for a couple of weeks and repeat the calprotectin to see if there is any difference.  When she has been bleeding before they have said probably fissures as usually on toilet paper but last few times its been in the loo and poo!   She suffers so much pain and just wish they had some answers for us.  Paed consultant had ruled out Crohn's only for adult to now throw it back in to the mix again.    

Thank you for all your replies.


----------



## DustyKat

Just a couple of things to add Cat26. 

Where on the abdomen is your daughter’s pain located? 

Constipation is not uncommon in Crohn’s when disease is located in the small bowel (ileum).

Low ferritin levels are also not uncommon in those with ileal Crohn’s. Have they done a CRP (inflammatory marker) blood test? There is a significant match up between an elevated CRP and low ferritin when there is active ileal disease. 

Dusty. xxx


----------



## Cat26

Hi Dusty.  She has slightly elevated CRP and ESR and both of these have been elevated for around a year (previously to that they were stable).  Not high amounts but each time we get told slightly elevated.  She gets pain all round her tummy but can be right side/left side and terrible backache also.   She gets upper pain but we know that's to do with her reflux.  She was bleeding again last night when she went to the toilet and she said there was also a couple of little blood clots on toilet paper.  We are back at our GP tomorrow to let him know how bad she has been.  Her ferritin level has been low for around 4 years (lowest level was 2).  She is around 18 just now but they want her above 50 but just not staying up.  Because she has lots going on I think they just don't have a clue and waiting on rheum to rule out lupus because of positive ANA antibody test.  Its been over 2 years they have been querying Crohn's then ruling it out then querying it again.   Just wishing for some answers.  Thank you all for your replies.


----------



## Catherine

Cat26,

What are they doing to treat the low iron?  We treated what started out low iron levels for 4 years prior to my daughters Crohn's dx.

There are many reasons for low iron but it should response to treatment.

Have you had iron studies done?  What do they say?


----------



## QueenGothel

happy said:


> Hello GirlwiththeCurl,
> I am paging QueenGothel for you as her daughter was diagnosed with Primary Sclerosing Cholangitis and she may be able to give you some advice. I believe that her diagnosis may have changed, but QueenGothel is very knowledgable about the condition.



http://sm.stanford.edu/archive/stanmed/2011spring/article6.html
GirlwiththeCurl,
Please read the above article and contact Dr Cox at Stanford about low dose oral vanco therapy.  There are very promissing results.  This article is 4 years old and kids have been in remission for even longer with this therapy and no sign of PSC.  

My kid was dx with a biliary stricture and is suspect to have PSC.  I assume they are searching for IBD because 80% of people that have PSC have IBD.  It is very uncommon to be the 20% and let alone be a child.  

As you know there are currently no therapies to halt the disease.  

The best way to reach Dr. Cox is through the following website.
http://www.childrenspsc.org

QueenGothel


----------



## GirlwiththeCurl

QueenGothel said:


> http://sm.stanford.edu/archive/stanmed/2011spring/article6.html
> GirlwiththeCurl,
> Please read the above article and contact Dr Cox at Stanford about low dose oral vanco therapy.  There are very promissing results.  This article is 4 years old and kids have been in remission for even longer with this therapy and no sign of PSC.
> 
> My kid was dx with a biliary stricture and is suspect to have PSC.  I assume they are searching for IBD because 80% of people that have PSC have IBD.  It is very uncommon to be the 20% and let alone be a child.
> 
> As you know there are currently no therapies to halt the disease.
> 
> The best way to reach Dr. Cox is through the following website.
> http://www.childrenspsc.org
> 
> QueenGothel


Thanks, QueenGothel!

I did actually try to contact Dr cox through that website but never got a reply.; I should try again.

Right now our hospital is hoping to take part in a oral Vancomycin study, which we may participate in (assuming it gets funded). 

Thanks for taking time to respond. I hope your daughter is doing well.


----------



## Taratk77

Hi! I'm new to this forum and I'm in need of advise. My son is 7 yrs old and still having accidents in his pants and will not go in the toilet. We have had this issue for a while and it's nothing new but it's also not getting any better. We have been going to lots of doctors to figure out what's going on but we do not have a diagnosis yet. My son does have a lot of anxiety when it comes to going to the bathroom and also bath time. He shuts down when I try to help him and talk to him about it. We have a routine that a doctor wants us to follow but there is no progression. His teachers feel he may not be able to feel it when he has an accident. I'm not sure if this is behavioral I know it's physical but I just don't know what to do and any advise is greatly appreciated! I feel like a horrible mom sometimes because I don't know what else to do and I feel I'm not doing enough.  He's been to so many doctors but obviously either they are the wrong Drs or they just don't know what to do either. Thank you for any advise or support! 
Tara


----------



## crohnsinct

Well obviously I am not a doctor but I can tell you your situation sounds eerily similar to the situation we had with our oldest daughter.  She does not have Crohn's.  She had encopresis.  That is when they are so constipated that the softer stool actually leaks out around the hard stuff. 


We also went to many docs and tried many things.  Of course you have to figure out why they are constipated to begin with but the first step for us was to get her cleaned out.  This issue lasted until she was 12!  

So our doc had us use Miralax to make her poop so soft that she couldn't possibly willing hold it.  Her muscles were very out of shape from not working properly for all those years.  She had to regain muscle control and strength. 

With that and diet changes and some behavior investigations...we found out this all started because she "learned" to hold her BM's.  She tended toward constipation to begin with, so her bathroom trips lasted a while.  I ws a working mom and always rushing around and saying, "hurry we are going to be late" Knowing a trip to the bathroom would make us all late, she just started holding her BM's and thus the decent into encopresis.  

What kind of docs have you seen?  Have you seen a pediatric GI?  Did they do any tests?  Does anyone in your family have IBD?  

I wouldn't try what we did without a doctor supervising.  I just offered it as something you could ask about and research further.  I would be really surprised if a ped GI hadn't thought of it though.  That is who helped us.


----------



## LauraJ

Was lurking, and saw lots of people talking about certain foods causing diahrea and or vomiting for their kids. People have also engines popping blood and mucus, one thing to bring up qith doctors in FPIES , it's relatively rare, our allergist is on e of the few doctors here in Canada that understands it. Our youngest started with profuse mucousy yellow diahrea, vomiting mucus , not growing , screaming in pain. Basically someone eats something, instead of the typical allergic reactions people are used to, it causes colitis type reactions.  
I know people are looking for if their kids have crohns, but thought this may help someone out there who is looking for answers.(typing on phone so excuse horrific mistakes!)


----------



## Michellejk

At my wits end.  My daughter is 16 years old.  She had her appendix out in July at that time they also noticed an ovarian cyst that was a little large.  She had additional stomach pain in August and doc wanted us to go to ER for CT scan.  They did an ultrasound of the cyst instead.  Everything was fine.  Daughter was exhausted and had extreme fatigue and started having muscle and joint pain.  Blood work from pediatrician indicated that she had previously had Epstein Barr 3 months prior.  Still no relief, took her to a Rheumatologist - she had previously been to a rheumatologist for previous positive ANA test fatigue and raynauds syndrome.  Mentioned that she was still having abdominal pain.  Rheumatologist recommended going to see gastroenterologist.  By now it was February.  Gastro doc does a colonoscopy and endoscopy.  Some inflammation in colon but thinks it is something acute rather than chronic have to wait for biopsy.  At follow up visit states that based on the biopsy they think it is colitis maybe IBD but can't diagnose at this time. Put my daughter on Lialda and omeprazole.  The pains at this time my daughter describes is burning sensation in upper abdominal area and stabbing pains in lower abdomen, low grade fevers daily, headaches, lower back, neck and knee pain.  She has missed a lot of school.  Lialda not helping at all, put her on prednisone, still no relief.  Took her to psychiatrist, now she is on antidepressant.  Blood work comes back with slightly elevated C reactive protein, slightly elevated platelets, slightly elevated liver SGPT.  Her vitamin d is 21. 
 Lowering her prednisone from 20 to 15 to 10.  Still having joint and abdominal pain enough to wake her up at night.  She does not have diarrhea, no weight loss.  She is mostly constipated.  We are going for another colonscopy and endoscopy next week.  I asked doctor about capsule camera but was told that is only for suspected bleeding.  I am watching my child go from a vibrant teenager to an old woman and it is killing me not to be able to fix her.  She is exhausted ever single day and is asleep by 7pm every night.  Any suggestions??  If the colonscopy and endoscopy come back normal where do we go from here?


----------



## Clash

I would ask for imaging as well. An MRE (magnetic resonance enterography) as it is a great tool for visualizing the small bowel which an endoscopy nor a colonoscopy can get to. Also a fecal calprotectin stool test can determine if she has inflammation in her bowels though it doesn't exclusively determine CD or IBD.

As far as joint pain that is a common extra intestinal manifestation (EIM) of IBD. There are some forms that run concurrently with active flares of the IBD and others that run independently. My son has juvenile spondyloarthropathy(JSpA) with his CD as well as another joint EIM of CD. I would keep pushing with both the rheumatologist and the GI. Also, those with IBD shouldn't take NSAIDs as it can wreak havoc on their stomach/bowels so I would keep that in mind when dealing with the rheumatologist and joint pain.


----------



## GirlwiththeCurl

I don't know how long Epstein Barr virus might affect liver enzyme levels, but if repeat bloodwork shows continuing elevated liver levels you might ask for a referral to a hepatologist.

My daughter has indeterminate colitis (almost certainly ulcerative colitis, but biopsies were inconclusive) as a secondary condition to a couple of autoimmune liver diseases.  :/


----------



## Michellejk

As an update I just called and asked to get the results from the blood work my daughter had taken for the Prometheus labs. It states Pattern Consistent with IBD and has a check box next to Ulcerative Colitis also has IfA Perinuclear Pattern Detected and DNAse Senstivity shows Sensitive and STATE 3 states variant detected - Homozygous.

I am assuming this means my daughter has Ulcerative Colitis. Ticks me off that the doctor's office received these results on the 15th, saw them on the 20th and they stated the results had not come back yet. She is scheduled for colonoscopy and endoscopy on Tuesday.


----------



## my little penguin

Actually you can have a false postive in the test
The colonscopy and endoscopy will give you the answers you need

Good luck


----------



## DanceMom

My daughter's Prometheus test indicated she had Crohn's. We don't believe that she does (although she could develop it in the future). That test ended up confusing us instead of giving us answers.


----------



## Michellejk

So the test that the doctor insisted on. Cost me 700 out of pocket is not accurate??  My daughter is miserable, we need answers after 7 months we are both tired and frustrated.


----------



## my little penguin

Colonscopy /endoscopy 
Pill cam 
And
Mre 
Plus fecal caloprotectin are the best at giving a complete picture 

Took ds 8 months to get a dx at age 7
But once we did the colonoscopy he was dx 

Good luck


----------



## Michellejk

Clash - My daughter's fecal calprotectin stool test was 85 which stated on the lab test was normal.


----------



## Michellejk

Update: My daughter had the colonoscopy and endoscopy yesterday.  Doctor stated that her colon looked perfect. Some slight redness in stomach area but no ulcers, now we wait for the biopsy results next week.  My daughter was upset that nothing was found, doctor was perplexed as to why we would both want her colon to come back anything other than normal.  After 7 months of testing and finding inconclusive results it would be nice to have a diagnosis.  Just something that can be treated, just to know!!!  Not sure where to go from here if the biopsy's are normal what do we do?  She has abdominal pain, headaches, low grade fevers, extreme fatigue, back, neck and knee pain daily.  I just want my happy vibrant daughter back!!


----------



## DanceMom

We understand that feeling! You are not alone!


----------



## my little penguin

Has she seen a rheumotolgist ?
Juvenile spondyloarthritis can cause sub clinical gi symptoms ( not detectable on a Scope )
Also all the other things you are talking about
For my kiddo scopes always look pristine sometimes biopsies match and sometimes not
We also found dietary changes ( formula only ) help a lot in his case - no one knows exactly why and treating his JSpA


----------



## Michellejk

She has seen a rheumatologist that passed her along to the Gastro doc. However, I may make another appointment to follow-up with Rheumatoid doctor. Want to see if she will test her for Lyme disease? I am now grasping at straws. Doctor told us her blood work that she took prior to the procedures came back great. But when I read it there are a lot of high and lows - granted they were all just a little high or little low, but my thought is that a healthy 16 year old should have all normal readings?
Low - alkaline phosphatase, s *44* High - alt (spgt) 33 
HIgh - WBC 11.8
Low - mchc *31.1*
High Lymphs (Absolute ) 5.2
 For once her c-reactive protein was normal 3.3


----------



## Pixiebo

Hi I am new to this sight,My son recently turned 16.About 18 mts ago he told me he had a lot of blood in his stools,he said it was going on a while and wad to imbaressed to say.Anyway I took him to our local g.p and was later sent to hospital, Where bloods ext were done, There conclusion was thst it could b an internal hemoride. ...After a 6 wk call back to hospital I was told that he had a hemoride and to give him a HIGH FIBRE diet, so I did. ..The symptoms proceeded and recently about 6 weeks or so my son developed an ingrown hair in lower back he was in a lot of pain,while we were in docs I brought up again about blood in stools ext.He had to go to hospital where we met a fantastic doc..Who we explain what was going on,She said that all his symptoms s sounded like he has imflamettory bowel diease. .my son gave stool sample and today we were told that the results of it was most cerently IBD,His levels were 3000 where normal is 50.He is being referred to a gasto doc,SLL I Have Been Really Told IS That He Has symptoms of chronz, so iv to waite now until we get app,I would like to know has anyone been in same situation. .at wits end....


----------



## pdx

Pixiebo:  So sorry that your son has been through such a rough time lately.  Waiting on a diagnosis is frustrating .  In order to be diagnosed with IBD, the gastro doctor will probably do an endoscopy and colonoscopy; those will let you know if he has IBD.  Keep an eye on your son while you wait for the appointment with the GI doctor, and take him in to your GP if you feel like he's getting sicker.  We had to do that with our daughter.  She got very ill while we were waiting 6 weeks for our GI consult, and she ended up admitted to the hospital by her GP.  That led to scopes just a few days later.


----------



## Michellejk

Another update.  After my daughter had her colonoscopy and EGD she was miserable and missed the rest of the week of school.  Took her to an urgent care, they changed her heartburn med from Omeprazole to Dexilant.  Went tonight to get her results, biopsies normal. Told it might be IBS.  My daughter lost it.  Told them that she felt better when she first came to them, and the meds they have given her, Lialda and prednisone have made her feel worse.  Her symptoms have gotten worse, she has constant abdominal pain upper a burning sensation and lower stabbing pains, her lower back hurts to the touch, neck pain, knee pain, elbow pain, constant migraines and low grade fevers.  NP stated that her symptoms sounded like crohns but test have been negative except for the Prometheus test.  Told her to get off of all meds, tapering off the prednisone and off Lialda for a minimum of two weeks then get an MRE.  She is thinking that maybe the medications are masking the disease.  Just a few moments ago my daughter came to me in tears, she was having stabbing pains just below her sternum and couldn't breath.  Intense pain is gone, but area is still sore to the touch.  Was going to take her to Emergency but she is feels that it is useless.  It is so hard to have a child going through this much pain and feeling helpless.


----------



## my little penguin

She was scopes while on steriods ????
Really ?
Steriods would fix everything so you won't see anything wrong
You need at least 7-9 weeks off steriods to get an accurate picture .

Wow !
Just wow !
Can you get a second opinion somewhere like a big university kids hospital ???


----------



## my little penguin

Oh and joint pain is common if she is weaning pred .


----------



## CarolinAlaska

I'm sorry your kids are suffering so.  Keep knocking and doing your own research.  I think the docs say IBS because they think it is nicer, but it's not if it doesn't give answers or fix the problem.  IBS is more of a symptom in my opinion and a title for a doc to use who doesn't want to figure it out.  My pediatrician calls it "I Be Stupid" and it titles the doc more than the patient!  Tell your daughter to hang in there. PPIs do nothing to help my daughter's pain either.  Time for another opinion.  Knock on every door until it gets figured out.


----------



## CarolinAlaska

Pixiebo said:


> Hi I am new to this sight,My son recently turned 16.About 18 mts ago he told me he had a lot of blood in his stools,he said it was going on a while and wad to imbaressed to say.Anyway I took him to our local g.p and was later sent to hospital, Where bloods ext were done, There conclusion was thst it could b an internal hemoride. ...After a 6 wk call back to hospital I was told that he had a hemoride and to give him a HIGH FIBRE diet, so I did. ..The symptoms proceeded and recently about 6 weeks or so my son developed an ingrown hair in lower back he was in a lot of pain,while we were in docs I brought up again about blood in stools ext.He had to go to hospital where we met a fantastic doc..Who we explain what was going on,She said that all his symptoms s sounded like he has imflamettory bowel diease. .my son gave stool sample and today we were told that the results of it was most cerently IBD,His levels were 3000 where normal is 50.He is being referred to a gasto doc,SLL I Have Been Really Told IS That He Has symptoms of chronz, so iv to waite now until we get app,I would like to know has anyone been in same situation. .at wits end....



Lots of us have been in similar situation.  Try not to worry.  It takes finding abnormal tests to get diagnosed and ultimately to find the treatment that will help.


----------



## CazL35

Hi 
My oldest (11) is going in tomorrow for endoscopy and colonoscopy under GA following months of hospital and GP visits. He has had awful stomach pain but quite high up, feels too sick to eat most days, when we were seen in hospital they said he looked too well to have anything seriously wrong and gave him medication for indigestion. After Christmas he developed masses of mouth ulcers that have never really cleared up, occasionally he will have a few days when he is clear but then they come back. He was admitted to hospital in February, he had elevated calprotectin levels (400+) and his CPR, WBC etc were all high, he was being sick and in lots of pain to the point that the A+E doc gave him morphine. This time they said because he had slightly red tonsils that was what was causing the abnormal bloods even though his throat didn't even hurt. More recently he has had diarrhea most days, an episode of bright red bleeding and also some very dark/black stools. We finally got a referral to paediatric gastroenterologist and are having the scopes as a result of that but feel as though it has been an up hill battle to get anyone to take it seriously. From reading other stories it sounds as though that is the norm?


----------



## Pilgrim

Yeah, pretty normal.  I can't count the times we were told, "She looks great!" On the road to diagnosis.
The scopes will tell the story.


----------



## my little penguin

Yep same here
Ds was vomiting constantly 
Had rectal prolapse at age 7
Stopped eating mostly due to abdominal pain 
Ped just said we needed to accept he was "just a skinny kid"
Thankfully we didn't need a referral to Gi
And Gi knew something was wrong but didn't think crohns
Due to normal blood and no diarrhea


----------



## CazL35

Well we had the colonoscopy and endoscopy yesterday and they said everything looked good but have to wait for results of the biopsies before they rule anything out as still has ulcers, pain, diarrhea, weight loss etc
 I guess it reassuring that there doesn't seen to be anything major but don't know what to think now


----------



## my little penguin

Fwiw
Ds Colonscopy /endoscopy looked ok at dx
Biopsies told a different story


----------



## CarolinAlaska

I hope that the biopsies give a good clear diagnosis.  Is he anemic?


----------



## CazL35

CarolinAlaska said:


> I hope that the biopsies give a good clear diagnosis.  Is he anemic?


No, to be honest it's only in the last few weeks he has had the dark stools and they haven't done bloods since February. Getting taken seriously is quite hard.


----------



## awilliams

I hope you all can help.  My 5 year old little girl started having stomach pains a few months ago after a hospitalization with influenza A.  She was born with a dairy allergy that through LDA is starting to outgrow.  She has been complaining of tummy pain and two weeks ago was sent home from daycare due to a painful bout.  I took her to the pediatrician since I was don't watching her in pain.  Upon arrival she had a low grade fever of 100.3.  Over the next 6 days she struggled with intermittent pains (more so when coughing, crying, eating).  I took her to ER where they ran blood, x-rays, urine and a ct.  Everything came back normal except for ever so slightly elevated AST of 41 (37 being high on values).  We have since received a referral for a ped gasto dr.  I was able to look back to her labs in Feb when she had Flu A and her AST was 39 then.  So all in all we are dealing with intermittent abdominal pain (always points to belly button), low grade fevers (runs in the 99 range when she is having bouts), stool that goes from normal to soft/greasy looking, and rising AST levels. 

I am not sure what is going on with her, but it hurts me to only be able to watch her in pain.

Any ideas???


----------



## CarolinAlaska

awilliams said:


> I hope you all can help.  My 5 year old little girl started having stomach pains a few months ago after a hospitalization with influenza A.  She was born with a dairy allergy that through LDA is starting to outgrow.  She has been complaining of tummy pain and two weeks ago was sent home from daycare due to a painful bout.  I took her to the pediatrician since I was don't watching her in pain.  Upon arrival she had a low grade fever of 100.3.  Over the next 6 days she struggled with intermittent pains (more so when coughing, crying, eating).  I took her to ER where they ran blood, x-rays, urine and a ct.  Everything came back normal except for ever so slightly elevated AST of 41 (37 being high on values).  We have since received a referral for a ped gasto dr.  I was able to look back to her labs in Feb when she had Flu A and her AST was 39 then.  So all in all we are dealing with intermittent abdominal pain (always points to belly button), low grade fevers (runs in the 99 range when she is having bouts), stool that goes from normal to soft/greasy looking, and rising AST levels.
> 
> I am not sure what is going on with her, but it hurts me to only be able to watch her in pain.
> 
> Any ideas???


I would request stool studies for c.diff.  My daughter contracted it by being in the hospital, not by being on antibiotics, which is the usual risk factor people look for.  Your daughter was in the hospital so it makes me think of that.  The GI can do other stool studies while he/she is at it.


----------



## Michellejk

Update - so my daughter has been off Prednisone and Lialda for approximately 1 month.  Have scheduled her MRE for the 25th.  Currently her stomach is hurting more, last two days she was vomiting, also increased bowel movements.  Today she has diarrhea.  Hopefully she can hang in there until the test on the 25th - at least she is already out of school.  Next year is her senior year, sure hope we can get a diagnosis and hopefully some type of treatment before then.


----------



## Michellejk

My daughter was scheduled to have her MRE this past Saturday but they cancelled as they did not receive the prior authorization in time.  Now scheduled for July 23!  In the meantime had her tested for Lyme Disease. Although she came back negative for the test, two bands of the test were positive and now we are being referred to infectious disease?  What does my daughter have?? It is anyone's guess at this time!


----------



## CarolinAlaska

Michelle, Scotty to hear about the delay of the test.  Doesn't it make you crazy?  I hope the I.D. doc can shed some light on interpreting the Lyme's test.


----------



## Michellejk

While at the Infectious Disease doc, noticed that my daughter has thrush which is unusual for a healthly 16 year old.  Waiting for the lab work done by the infectious disease doc.  She doesn't believe my daughter has an infectious disease causing her symptoms but is testing her for HIV, strep, cat scratch fever, Hep a, b and C.  Being told that maybe depression is causing my daughters pain - however I already have her seeing a psychiatrist and she is on an antidepressant which doesn't seem to work. The MRE was normal per the Pediatric Gastro, they have now diagnosed her with IBS.  They asked how my daughter was and I stated, the same, still has 24/7 abdominal pain (upper and lower), back pain, joint pain, headaches and low grade fevers daily.  Per the office, there is nothing more they can do, so... good luck.  Follow up in 6 to 8 weeks. 

 I am so frustrated.  I just want my daughter to be healthy again.  Not sure where to go from here.


----------



## DanceMom

Maybe I've asked before, but has she had immune testing done?


----------



## my little penguin

Most of the things you list are not GI 
Have you looked into spondyloarthritis ????
Rheumatologist ??
Also have you looked into pediatruc pain amplification programs ??
They work on pain without meds and since your Dd ( like my son ) have a lot of things going on pain wise once you get the pain down then you can see what really is left .

Tried formula only diet for a few weeks ??  Does. It help ??
Seen Neuro for the headaches ??


----------



## my little penguin

Tagging maya142


----------



## Maya142

A rheumatologist and an immunologist are very good ideas.

I agree with MLP - it could be juvenile spondyloarthritis. Low grade fever and joint pain are common with it. Does she have any swelling of any of her joints? Redness? Pain that gets better with movement and worse with rest? Morning stiffness?

 It generally starts in the lower limb joints (knees, ankles) but hip and lower back involvement is also common.

Kids with JSpA can also have gut issues.

A pain amplification program is a great idea too. My daughter has pain amplification. In her case, after years of uncontrolled inflammation in her joints, her nerves got "used to" sending pain signals and continued to send them even after the inflammation got better. So she is in much more pain than she should be. It essentially just means that the nerves become extra sensitive to pain for whatever reason. It is VERY real pain and needs to be treated.

Pain amplification programs focus on desensitizing the nerves so they stop sending those pain signals. Some kids come in with horrible migraines, others with diffuse joint pain and others with abdominal pain. The kids who need the programs are not functional because the pain is so debilitating. 

They use intense physical therapy, occupational therapy, cognitive behavioral therapy etc. so the child's nerves get desensitized and so they learn to cope with the residual pain. They don't promise that the kiddo will be pain free after the program, just that they will be more functional and usually, over time, the pain decreases.

Many of the big children's hospitals have these programs. Some are inpatient, others are day programs and others are outpatient. My daughter did a 3 week inpatient program. 

Hang in there. There are still options.


----------



## Lucia22

Hi, my daughter has persistent chronic stomach pain which has become severe recently. Her fecal Calprotectin level is over 600. However, all her blood tests are normal. Ferritin is low normal. She has fatigue and heel pain but has always had chronic constipation, never loose stools. We have a long wait for tests on the NHS. Doctor has suggested IBD. Anti spasmodics don't help, nor do regular painkillers. Any advice would be much appreciated. Thank you.


----------



## Maya142

Is she having scopes any time soon? It does sound very much like IBD. MANY kids on here have constipation instead of the typical Crohn's diarrhea. Mine started out like that too! Fatigue is very common, especially since she has a low Ferritin (have they given her iron supplements?). Joint pain is also common, including heel pain. If it persists, seeing a rheumatologist might help.

Has she tried using a heating pad? Unfortunately, the things that will work best for IBD pain are IBD treatment (steroids etc.). You could try a liquid diet -- Ensure or Boost if they are available -- while you are waiting.


----------



## pdx

I'm sorry that you have to wait so long for testing.  As Maya mentioned above, scopes are what is really needed for an IBD diagnosis.  After my daughter's fecal calprotectin came back high, the soonest we could be scheduled to see a GI doctor was in 6 weeks.  My daughter was very sick at that point, and we ended up taking her to urgent care just a few days after getting the calprotectin results.  The urgent care doctor admitted her directly to the hospital, and scopes happened within a few days once she was inpatient.  So if your daughter's health continues to decline, think about taking her in either to her primary care doctor or to the emergency department.  Sometimes it's OK to wait, but if she does have IBD, sometimes things can go downhill quickly.  

I hope you figure out what's going on soon--it's really hard while you're waiting for a diagnosis.


----------



## notaparanoidmum

I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all


----------



## Lucia22

Maya142 said:


> Is she having scopes any time soon? It does sound very much like IBD. MANY kids on here have constipation instead of the typical Crohn's diarrhea. Mine started out like that too! Fatigue is very common, especially since she has a low Ferritin (have they given her iron supplements?). Joint pain is also common, including heel pain. If it persists, seeing a rheumatologist might help.
> 
> Has she tried using a heating pad? Unfortunately, the things that will work best for IBD pain are IBD treatment (steroids etc.). You could try a liquid diet -- Ensure or Boost if they are available -- while you are waiting.


Thank you for your quick replies. That's really interesting about the constipation. My daughter also has nausea all the time and mouth sores. She has been diagnosed with CFS/ME. Other symptoms include tachycardia and palpitations. We saw an incredibly stupid gastroenterologist who suggested counselling! We  have seen three rheumatologists and two podiatrists but no one knows why she has such bad heel pain. A scan showed no inflammation. The cardiologist doesn't know why she gets palpitations.  It's all a mystery to every doctor we see.  Mast cell syndrome has been mentioned and we are trying Sodium Cromoglycate. Antispasmodics and painkillers don't work. The doctor says her Ferritin, which is 10, is just borderline and she doesn't need a supplement. 
The pain is really bad when she eats. She is permanently attached to her hot water bottle. The new gastro doc has agreed to speed up her tests. I am really worried about the GA. Also is it traumatic for kids having a colonoscopy?  Is it painful afterwards? My son had a lot of pain after just an endoscopy.


----------



## Maya142

Not usually. Most kids think the prep is the worst part of the colonoscopy. The actual scope itself is just a nap. My daughter had general anesthesia with her scopes too. She was absolutely completely asleep during the scope and didn't feel anything. They even put in the IV after she was asleep!

They pump in air during the scopes, so your kiddo might have some pain after it, but it is never too bad for my daughter. Something like Gas-x or whatever the equivalent is in the UK, might help.

Heel pain is often associated with Spondyloarthritis, which can be associated with IBD. Typically, a rheumatologist would treat Spondyloarthritis. Both my daughters have it. Really any joint can be involved, but hip pain, heel pain, knee pain and SI joint/lower back pain are the most common. 

What kind of scan did she have for her heels? Did the podiatrist give her orthotics? Custom orthotics really helped my girls. You can also try Voltaren gel -- it's an NSAID but since it's topical it does not affect the gut as much. You should check with your GI first though.

Her Ferritin seems a bit low to me -- maybe not under the lower limit, but low all the same. Is she taking a multivitamin with iron? If they don't want her on iron supplements, that might help. A low Ferritin could definitely cause fatigue.

Hang in there -- hopefully you will have more answers after the scopes are done!


----------



## Lucia22

pdx said:


> I'm sorry that you have to wait so long for testing.  As Maya mentioned above, scopes are what is really needed for an IBD diagnosis.  After my daughter's fecal calprotectin came back high, the soonest we could be scheduled to see a GI doctor was in 6 weeks.  My daughter was very sick at that point, and we ended up taking her to urgent care just a few days after getting the calprotectin results.  The urgent care doctor admitted her directly to the hospital, and scopes happened within a few days once she was inpatient.  So if your daughter's health continues to decline, think about taking her in either to her primary care doctor or to the emergency department.  Sometimes it's OK to wait, but if she does have IBD, sometimes things can go downhill quickly.
> 
> I hope you figure out what's going on soon--it's really hard while you're waiting for a diagnosis.


Thank you for your kind advice. It's so good being able to talk to parents who know what it's really like. I asked the gastroenterologist if my daughter could be admitted to hospital but he said it wouldn't speed up the process. He did agree to expedite her endoscopy and colonoscopy though. So I am waiting to hear. 
How is your daughter now? I am very nervous about the tests and the general anaesthetic.


----------



## Maya142

I'll tag my little penguin - she knows a lot about Mast Cell disorders.


----------



## Lucia22

Maya142 said:


> Not usually. Most kids think the prep is the worst part of the colonoscopy. The actual scope itself is just a nap. My daughter had general anesthesia with her scopes too. She was absolutely completely asleep during the scope and didn't feel anything. They even put in the IV after she was asleep!
> 
> They pump in air during the scopes, so your kiddo might have some pain after it, but it is never too bad for my daughter. Something like Gas-x or whatever the equivalent is in the UK, might help.
> 
> Heel pain is often associated with Spondyloarthritis, which can be associated with IBD. Typically, a rheumatologist would treat Spondyloarthritis. Both my daughters have it. Really any joint can be involved, but hip pain, heel pain, knee pain and SI joint/lower back pain are the most common.
> 
> What kind of scan did she have for her heels? Did the podiatrist give her orthotics? Custom orthotics really helped my girls. You can also try Voltaren gel -- it's an NSAID but since it's topical it does not affect the gut as much. You should check with your GI first though.
> 
> Her Ferritin seems a bit low to me -- maybe not under the lower limit, but low all the same. Is she taking a multivitamin with iron? If they don't want her on iron supplements, that might help. A low Ferritin could definitely cause fatigue.
> 
> Hang in there -- hopefully you will have more answers after the scopes are done!


Thanks. That's good to know.  My daughter only had an ultrasound scan for her heels, which didn't show any problems. Yet she is in pain as soon as she walks. We have tried various orthotics and physio therapy strengthening exercises but they are all just useless. I will try the gel thank you. The doctors just seem to think she should put up with the pain. Did your kids have inflammation showing on scans? The rheumatologist said it must be a mechanical problem, as nothing showed up. However the podiatrist said there is no mechanical problem!
Her Ferritin seems too low to me too. She eats plenty of meat. It seems she's just not absorbing the iron properly. Iron supplements give her more pain. 
I went through the same situation with my son and the docs could never work out what was wrong with him either.


----------



## Maya142

Hmm...honestly, my girls have obvious arthritis in other joints (plenty of inflammation and even bone damage in their hips and SI joints). Heel problems are so strongly associated with spondyloarthritis, that we have never imaged their heels, just treated them. 

Depending on who's reading the ultrasound, it could have been that the inflammation was missed. An MRI is a more accurate scan -- particularly an MRI with contrast.

Heel pain is typically enthesitis -- inflammation where a tendon/ligament inserts into the bone. It is absolutely typical of Spondyloarthritis, and especially in kids, juvenile spondyloarthritis often starts with heel or knee or ankle pain. If it's enthesitis, you would not see swelling usually, but the inflammation is very real and very painful. 

Most kids would be given NSAIDs at first. Since she has gut problems, that might be hard. That's why Voltaren gel might be a better option. 

The next steps (if you have an official diagnosis of spondyloarthritis) are Sulfasalazine or Methotrexate (which are immunomodulators), or eventually a biologic like Remicade or Humira (which are also used to treat IBD).

Spondylitis.org has a lot of good info.

In kids, juvenile spondyloarthritis is also sometimes called "enthesitis related arthritis," so that's another term to look up if you want more information. 

Diagnosis is based on a clinical exam, bloodwork and often MRIs or x-rays.

My girls like to soak their feet in a tub of water when their heels really hurt. It can help a lot.

Another link for more info: http://www.aboutkidshealth.ca/en/he...uvenile-enthesitis-related-arthritis-era.aspx


----------



## pdx

Lucia22 said:


> Thank you for your kind advice. It's so good being able to talk to parents who know what it's really like. I asked the gastroenterologist if my daughter could be admitted to hospital but he said it wouldn't speed up the process. He did agree to expedite her endoscopy and colonoscopy though. So I am waiting to hear.
> How is your daughter now? I am very nervous about the tests and the general anaesthetic.


My daughter is doing very well now.  She's symptom-free and doing some major catching up on growth now that she's absorbing her food again.  How is your daughter's growth for the past few years?  

Also, your daughter will most likely not have general anesthetic for any of the testing; it's usually just a deep sedation for scopes.


----------



## Maya142

> Also, your daughter will most likely not have general anesthetic for any of the testing; it's usually just a deep sedation for scopes.


It depends on the hospital -- our Children's Hospital uses general anesthesia for scopes. They have only just started using deep sedation and only for older kids. I have NO idea why -- this is one of the best hospitals in the US.

Either way, she will be ok. My daughter has had both - sedation and general anesthesia, and both times she was very asleep, and woke up saying that it was a great nap .


----------



## my little penguin

Mcas papers
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

http://m.gut.bmj.com/content/31/7/791.full.pdf

http://williams.medicine.wisc.edu/mast_cell_activation_2011.pdf

http://ainotes.wikispaces.com/Mast+Cell+Disorders

http://www.mastocytosis.ca/2011 MSC Medical Lecture with Slides.pdf


----------



## Lucia22

Such useful advice everyone, thanks. 
Pdx - I am so pleased that your daughter is doing well now. It's good to hear that kids improve. My daughter's growth has actually been very good. She has grown lots over the past year. Previously, her heel pain seemed to tie in with growth spurts but now the pain is there as soon as she walks. She has to use a wheelchair at times.
Sedation sounds better than a g.a.

Maya - that is very reassuring. I suppose I've been putting off the test over the last year, trying various exclusion diets. I just always worry more because I am a bereaved mum.

My little Penguin- that is a very comprehensive list, thanks. Do you have a child with mast cell syndrome? We are doing the low Fod map diet atm but wonder if we should try low histamine etc next. Have you tried the low anime, histamine diets?I know the Paleo diet can be very effective but it is so restrictive.


----------



## my little penguin

Ds is being tested for mast cell disorder this week (24 hour urine test ).
When we first looked at MCAS so new a few years ago our dics thought we thought he had mastocystosis 
He has tried fodmap it did nothing 
He does best only mostly formula diet per his Gi 
It tends to reset his system
So he is on amino acid based formula neocate Jr while we trial in one food at a time .
He is extremely allergic to everything 
Foods pollens drugs cold animals etc...
Has flushing and random hives as well
So we wait for the test and test results

Here is a group that covers MCAS as well as allergy stuff
http://community.kidswithfoodallergies.org/topic/mast-cell-activation-syndrome-support-circle

Requires login but it's free


----------



## Michellejk

Thank you all for your advice and kind words.  My daughter has had 24/7 stomach pain for over a year, chronic fatigue, back pain, neck pain, headaches, low grade fevers, etc.  We have seen Rheumatology, Pediatric Gastro, Infectious Disease, Psychiatrist, general practitioner, now GYN currently all test are showing negative. The Prometheus test indicated consistent with IBD specifically UC but the second colonoscopy and endoscopy were normal and the MRE was also normal.  Rheumatologist has ran tests for specific Autoimmune disorders and all are negative.  The general practitioner ran her vitamin D levels which were low and immunoglobin A which was low, her ALT is always slightly elevated, Lyme disease was negative but had two positive bands which the Infectious disease doctor dismissed as not an indicator of anything. She just had an ultrasound last week to look for endometriosis.  We will receive the results tomorrow.  My daughter is a Senior in high school this year and has opted to take all courses online in order to not have issues with her attendance.  My 16 year old has become a tired, depressed 17 year old with chronic pain.  The next referral we have is to see a Neurologist.


----------



## DanceMom

Here's some info on Selective IgA Deficiency:
http://primaryimmune.org/about-prim...cific-disease-types/selective-iga-deficiency/

Immune Deficiencies can be difficult to diagnosis. You really need to see a knowledgeable Immunologist. The IDF should be able to help you locate one in your area.


----------



## Lucia22

My daughter has finally had the endoscopy and colonoscopy. No inflammation was found. The doctor thinks the fecal Calprotectin was a false positive and that it is just IBS with constipation. It will be a few weeks before the biopsy results come back. That would all be very reassuring if my daughter wasn't in pain day and night, unable to go out or enjoy the school holidays. If it was IBS then you would expect IBS meds, mebeverine etc to work but they don't have any effect all.  The mast cell syndrome meds also don't work. Where do we go from here?

Michellejk - our daughters seem to have many symptoms in common. We have seen several rheumatologists, a gastroenterologist and immumologist. All her symptoms are a mystery to each doctor.


----------



## my little penguin

MCAS meds can take months to build up 
What was she put on ?
Fwiw Ds first colonscopy looked ok 
We were told food intolerance 
But biopsies showed crohns


----------



## Maya142

Lucia22 - has your daughter had an MRE or a pillcam? Sometimes IBD can hide in the small bowel, where scopes cannot reach. There are definitely a few kids here diagnosed with some sort of small bowel bowel imaging.

A false positive with Fecal Calprotectin is quite rare. Have they talked about repeating the test in a few weeks? If it was a false positive, it would be normal then.


----------



## Lucia22

my little penguin said:


> MCAS meds can take months to build up
> What was she put on ?
> Fwiw Ds first colonscopy looked ok
> We were told food intolerance
> But biopsies showed crohns


She's been on Sodium Cromoglycate for about 2 months. The rheumatologist said to try it at a low dose for 2 weeks and if it helped, then go up to 200 mg 3 times a day. It didn't help but we felt it was worth trying.  We were never told it could take months to build up!
We've also been told food intolerance. We've tried every exclusion diet over the past 5 years. Now trying Fodmaps. Nothing helps. 
My daughter is actually hoping that something will show in the biopsy, so she can have some treatment, even if it is Crohns. I think that shows how much pain she is in, which makes me feel sad.  Previously a doctor has tried to make out its all in her head but the medics always seem to say that when they don't have an answer.
That's very interesting about your son's first colonoscopy.


----------



## Lucia22

Maya142 said:


> Lucia22 - has your daughter had an MRE or a pillcam? Sometimes IBD can hide in the small bowel, where scopes cannot reach. There are definitely a few kids here diagnosed with some sort of small bowel bowel imaging.
> 
> A false positive with Fecal Calprotectin is quite rare. Have they talked about repeating the test in a few weeks? If it was a false positive, it would be normal then.


She's only had a colonoscopy and endoscopy so far. I will ask about an MRI and pill cam. 
No, the doc didn't mention repeating the fecal calprotectin. It does seem very strange, especially as she had a high level of over 600. 
Thank you for your advice.


----------



## Maya142

600 is high! My kiddo who has IBD has never had one that high! I would ask them to repeat it if they say it's a false positive. 

My daughter's first set of scopes also did not show a whole lot -- small ulcers and some redness, that's it. But biopsies showed us that it was definitely Crohn's. 

Has your daughter seen a pain management doctor for the pain? Or tried a TENS unit?

Hang in there!


----------



## my little penguin

Typically you need h1 and h2 blockers plus luekotriene and cromolyn 
There is an MCAS group here 
http://community.kidswithfoodallerg...e?reply=487837518039109353#487837518039109353

The moms there have lots of MCAS experience 
We are new to the testing 
Did she have testing done ?
Tryptase and 24 hr urine


----------



## notaparanoidmum

notaparanoidmum said:


> I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all


so we are finally having the colonoscopy, endoscopy on tue 20/9/16 & wil get answers


----------



## notaparanoidmum

notaparanoidmum said:


> I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all


no longer undiagnosed been confirmed 2day as crohns in her stomach, large & small bowel so av started tube feeding her for the time being anybody elses child had this treatment please


----------



## happy

So sorry to hear that she is having to deal with this disease, but so glad to hear you have a diagnosis. Here is a link to threads on the forum where parents discuss their experiences with children who have had tube feeding or a diet of liquid enteral nutrition: http://www.crohnsforum.com/showthread.php?p=694576#post694576
:goodluck:


----------



## Maya142

Lots of kids have here have had feeding tubes, including mine. Do you have any specific questions? Most kids do exclusive enteral nutrition with a feeding tube (only formula, no food) while others are allowed some food.

My kiddo had an NG tube. She learned how to place it herself and would insert it at night and  remove it in the morning (so no one at school had to know). She got her feeds overnight. She was allowed to eat, so she ate during the day.

Some kids choose to keep the NG tube in all the time and don't want to insert it every night. 

The first night was rough - she was miserable and her nose and throat were sore. We used a tiny, infant tube (though she was 16) - the size was 6Fr. Within a couple days, she was used to it and it was a breeze. She was admitted to the hospital to start tube feeding because she was so malnourished but sometimes it's done in an outpatient appointment.

Good luck!


----------



## Farmwife

My girl had a feeding tube surgical place in her abdomen.
It's called an AMT Mini One Button.
It's been a life saver! 
First she started with a ng tube but her disease is mainly in her upper give area. 
We knew this was going to be a long haul so onto the button. 
My girl is 7 now but placed at 4.


----------



## notaparanoidmum

we have to be admitted tomorrow to start the polymeric diet she isn't allowed to eat anything it is for malnourishment but they have told us the tube is there till we no longer need it in her nose straight to her stomach as she is active crohns at the minute


----------



## my little penguin

If it's polymeric formula 
Then she might be able to drink it orally and not need a tube 
Has she tried that brand before ??
I would ask 
Ds did een but he did his with semi elemental ( tastes worse than polymeric but better than elemental) peptamen Jr 
He drank it all orally no other food
This past summer he did 8-9 weeks of een with elemental formula - neocate Jr and drank it all orally 
He still drinks some orally now 
The Gi was surprised he didn't need a tube 
But definitely worth a try 
We pinched his nose 
Used a straw to by pass taste buds and made it really cold with ice 

Tagging cat-a-tonic she is still doing een with vionex ( elemental ) orally


----------



## Cat-a-Tonic

As MLP said, I was orally drinking 6 Vivonex per day when I was doing EEN for a couple weeks.  Then I started decreasing the Vivonex as I added foods (low-FODMAP) back in.  I'm down to just 1 Vivonex per day now, and I actually like the taste.  When I first tried it, I thought it tasted like wood chips.    But now I like it and find I even have cravings for it!  It's an acquired taste, but I acquired it quickly.  It's not bad at all once you're used to the taste.


----------



## notaparanoidmum

it has to be tube fed & its for 6wks initially could be longer depending on her in the last 8wks she has lost 5.4kg & is now just under 4st which is low for a 12yr old


----------



## pdx

notaparanoidmum said:


> it has to be tube fed & its for 6wks initially could be longer depending on her in the last 8wks she has lost 5.4kg & is now just under 4st which is low for a 12yr old


My daughter had really good results with tube feeding.  Like your daughter, she was 12 when she was diagnosed, and she was also severely underweight.  She used the tube for 90% of her calories for about 8 weeks, and then just used it overnight for supplementary nutrition for another couple of months.  She gained 20 pounds during those months of tube feeding, and she gained another 25 pounds and 4 inches of height during the next year after Remicade started working for her.  

The tube feeding also helped resolve her abdominal pain and nausea.  Hope your daughter has good results and starts feeling better really soon.


----------



## Maya142

My daughter also did well on tube feeding. It might take a little while for her to feel better, but it should help. My kiddo was very underweight too and gained 25 lbs with a feeding tube!

Hope she is doing ok with the tube so far.

Good luck!


----------



## Michellejk

Hi everyone!  No changes here, my daughter still has 24/7 pain and still no idea why.  They did find that she now has a complex ovarian cyst. They are doing a laparoscopy sometime soon to check for endometriosis.  However, current Gyno does not think she has that, based on her symptoms, she thinks she has IBD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! OMG!! Almost lost it.  Told her we have been there and done that.  Then she stated that she seems to have inflammation and maybe it is IBS???  I am so... over doctors!  Also suggested chiropractor (which we have already done) and for my daughter to take Tumeric, Cinnamon and go on the Paleo diet.  Anyway, we are still getting the laparoscopy done and see what happens.  Any suggestions??  We have now had, 2 colonoscopy's (one with inflammation one without), 2 endoscopy's (one with gastritis one without), Prometheus test which indicated her results were consistent with IBD specifically UC, Negative MRE, tried Lialda (no help), Prednisone (little effect) - Gastro decided it was IBS and told me there is nothing to they can do for that.  Psychiatrist has had my daughter on 3 antidepressants and since none but the first one (which made my daughter too tired) worked, told us there was nothing more she can do.  Infectious Disease, misdiagnosed my daughter as having thrush (she did not), tested her for HIV, cat scratch fever etc (waste of time), Rheumatologist all tests other than ANA come back negative. Gave her a script of lyrica for the back pain, it did not help. General practitioner labs show low Vitamin D, low immunoglobulin A, elevated C-reactive protein, elevated ALT.  Have yet to see a neurologist.

 Luccia22 - I agree!  Let me know if you ever get a diagnosis and I will keep you posted as well.


----------



## Farmwife

DanceMom does A have low immunoglobulin A?
Sorry I forget?


----------



## DanceMom

Farmwife said:


> DanceMom does A have low immunoglobulin A?
> Sorry I forget?


No, she has low IgG. I don't believe there is a treatment for low IgA.


----------



## my little penguin

Tagging missleopard83 
They thought ibd but found out it was endometriosis 

Cysts and inflammation can cause havoc  on the gi tract as well since they sit side by side 
I know Dusty DD was Dx on the operating table so hopefully the surgery will help your kiddo get answers


----------



## my little penguin

Something else to look at 
https://helpforsweetssyndromeuk.wor...ion/what-are-the-symptoms-of-sweets-syndrome/

Since some think of cat scratch disease when it's sweets syndrome 

Hugs


----------



## my little penguin

Michellejk
Have you looked at fever syndromes
http://www.autoinflammatory-search.org/diseases


----------



## Needinganswers

I'm looking for answers and really hoping someone can help. My daughter is 7 and her abdominal pain started when she was 4. She has pretty much had daily pain in the same exact spot since it started almost 4 years ago. I've taken her to multiple doctors and had many tests done. The only explanation they have came up with is functional abdominal pain or maybe abdominal migraines. It started right around the time she had a seizure (her 1st) on her 4th birthday. From the time the pain started she has always pointed to the same exact spot when I ask where it hurts. It's in the high right quadrant. She has had upper and lower scopes done and they both came back normal. Most of her labs have came back normal. Once her bilirubin came back high but when tested again it was ok. Her daily complaints are sever abdominal pain and nausea. She often gets nauseous to the point she can't eat. However, she doesn't lose any weight. She also gets frequent headaches that she is on a migraine medication for. She has regular bowel movements, usually 2 times a day. It's not diarrhea but it is more soft than firm. It breaks my heart seeing her in so much pain and not being able to help her! Does anyone have any advise or thoughts? I'm sick of the doctors acting like it's nothing when I KNOW there is something wrong. I feel like she just can't be a kid.


----------



## Maya142

Has she had any motility testing? Does the pain occur after she eats? I would look at Gastroparesis -- delayed gastric emptying. That causes both abdominal pain and nausea but it's usually after eating. Kids are often too nauseous to eat and sometimes lose weight.

What are they doing for the functional pain? Have they tried any medications or seeing a pain management doctor? There are also pediatric pain programs for chronic pain, which can really help.


----------



## Needinganswers

Thank you for your response! She has had upper and lower scopes done and they both came back normal. She has also had a HIDA scan,x-rays,ultrasounds and a lot of lab. Her GI never gave her anything for the pain. He basically said when they do all the tests and everything comes back normal it's just considered  functional abdominal pain. He said maybe she will outgrow it. I'm just not happy or satisfied with that answer. I feel there is something going on and something that can be done to help her. She basically wakes up with her stomach hurting and goes to bed with it hurting. It hurts before she eats and after. It just hurts all the time. I've kept a diary of when it hurts and when and what she eats but there doesn't seem to be any triggers or insight to what is causing it. Being nauseous is why she won't eat when she doesn't. She just says she feels like she can't. She is also very gassy if that has anything to do with any ideas you may have. She has tried taking probiotics and gas x and some other things. Nothing has offered any relief.


----------



## Maya142

Sometimes something triggers pain -- such as a regular kid virus -- and starts a pain response that the body remembers. 

In my daughter's case (she has juvenile arthritis), it was inflammation that was the trigger. But once we got the inflammation under control, the pain remained, because her nerves were so used to the inflammation, that they kept sending pain signals, long after we had it under control (for the most part, anyway).

This is called "amplified pain" or "visceral hyperalgesia" or "central sensitization" -- the body is sending pain signals when there's no real cause for them. It doesn't mean the pain is not real -- it is very real and needs to be treated. It just means it needs to be treated differently.

Pediatric pain programs use many therapies to "re-train" the nerves. They involve PT/OT, cognitive behavioral therapy, biofeedback etc. There are children's hospitals all over the country that have them - Boston Children's is one, Cleveland Clinic, CHOP.

I'm not saying this is what your daughter has, just that it might be something to look into, especially if you cannot find a cause. 

They do use medication when necessary - typically medication for nerve pain, like Elavil or Gabapentin or Lyrica. It's usually an anti-convulsant or anti-depressant which in smaller doses, work for nerve pain.

The other thing I mentioned - motility issues - require special testing for a diagnosis, which scopes or ultrasounds or labs do not replace. For example, for Gastroparesis you would need a gastric emptying test to figure out whether she has it. For other kinds of motility issues, there are different tests.


----------



## DanceMom

I would ask to try a medication that treats IBS. If it is functional abdominal pain you still have options. I would also do allergy testing to check for food allergies. You could also do an elimination diet to check for any intolerances. Good luck!


----------



## Heather11

Hi Lucia22 and Michellejk -
I found this page about 6 months ago and have been “lurking” in the background and watching your posts with interest.  My daughter has similar symptoms to both of your daughters and has been ill for 4.5 years.  She became ill at the age of 11 and has now just turned 16.  She has missed most of middle school and high school and she will take the high school equivalency exam when we can get her to feel well enough.  We have been able to track the onset of a majority of her symptoms to a meningitis-like/flu-like illness that occurred in 6th grade where most of the school got sick.  While it appears that the rest of the kids got better, my daughter and 2 other girls did not.  All three girls have struggled for the past 4.5 years with the other 2 girls making steady progress toward recovery and with each passing year, they can do more and more.  However, my daughter appears to get better and then she will crash.  We are currently in the middle of an episode that began about two months ago that has her at times lying in bed rolled up in a ball in pain.  My daughter’s main symptoms are:  24/7 abdominal pain (pain levels of 2 to 8 out of 10; current levels are 5-8), extreme debilitating fatigue (fatigue levels of 2 to 8 out of 10; current levels are 6-7), periodic episodes of blood and mucus in the stool, constipation, acid reflux, some nausea, canker sores,  low iron, low ferritin, periodic burning sore throat, periodic cough, excessive cavities in her teeth (15 cavities in 2015 and 11 cavities in 2016), significant neck and back pain 2-3 times a week, poor sleep, poor appetite, and depression.  My daughter’s abdominal pain is so bad that she won’t let most doctors probe her abdomen and she is a kid that has always had an extremely high tolerance for pain.  She has had 4 colonoscopy/endoscopies, all of which have shown areas of redness and “slight ulcerations” in her colon with the exception of the last colonoscopy/endoscopy which showed a small area of Crohn’s.  Her Fecal Calprotectin levels have ranged from 73 to 337 and we are awaiting for the results of yet another one which will determine if she will have another colonoscopy/endoscopy (her 5th).  She recently had a saliva cortisol test which showed that her cortisol levels were very low.  The jury is still out on that one…  One thing that has worked the most for us is managing her sleep and her energy level – i.e. significantly reducing her activities, taking sleep aids, etc.  This approach got her pain and fatigue levels down to 1-2 this summer for the first time since she became sick – she actually rode a bike for the first time in years!  But then she “crashed” and we haven’t gotten anything to work.  There appears to be a direct relationship between sleep quality/quantity and her wellness/energy level the next day.  We have also had some help with Budesonide EC for pain but that seems to have stopped working now.   There have been multiple procedures, medications, doctors, and diagnoses, but whatever treatment we try, it just doesn’t seem to address the root of the problem.   My daughter currently sees a pediatrician, a gastroenterologist, a chiropractor, a naturopath, and a therapist, all of which have added value, but we are still looking for the main cause as to why she can’t seem to get better.  My daughter and I are also “sick of doctors” and have walked the “psychological pain” path more than once….  The last time psychological pain was mentioned, I became a bit “spirited” which may have sparked some interest/movement in some of her doctors.  My daughter and I are open to the possibility of a psychological aspect/cause but after many evaluations nothing has been identified and therefore there is no treatment in place for that.  I wanted to reach out to you both to let you know that you are not alone.   While it has waxed and waned at times, I have hope that my daughter will get better and will go on to live a long and fulfilling life.  We just take one day at a time….


----------



## CarolinAlaska

Needinganswers said:


> I'm looking for answers and really hoping someone can help. My daughter is 7 and her abdominal pain started when she was 4. She has pretty much had daily pain in the same exact spot since it started almost 4 years ago. I've taken her to multiple doctors and had many tests done. The only explanation they have came up with is functional abdominal pain or maybe abdominal migraines. It started right around the time she had a seizure (her 1st) on her 4th birthday. From the time the pain started she has always pointed to the same exact spot when I ask where it hurts. It's in the high right quadrant. She has had upper and lower scopes done and they both came back normal. Most of her labs have came back normal. Once her bilirubin came back high but when tested again it was ok. Her daily complaints are sever abdominal pain and nausea. She often gets nauseous to the point she can't eat. However, she doesn't lose any weight. She also gets frequent headaches that she is on a migraine medication for. She has regular bowel movements, usually 2 times a day. It's not diarrhea but it is more soft than firm. It breaks my heart seeing her in so much pain and not being able to help her! Does anyone have any advise or thoughts? I'm sick of the doctors acting like it's nothing when I KNOW there is something wrong. I feel like she just can't be a kid.


I'm sorry to hear of your daughter's ongoing pain.  For some reason, I wonder about a vascular issue with your daughter.  Perhaps she has a malformation that didn't grow well with her and it gets kinked off causing infarction or oxygen deprivation.


----------



## Michellejk

An update. My daughter had her laparoscopy done yesterday. The GYN found the following, she had adhesions from her abdomen to her bowel (from the appendectomy), additional adhesions near her belly button from previous surgery. They removed the cyst from her left ovary, but had to also remove part of her fallopian tube because of the way the cyst was wrapped around it. The doctor believes that she has endometriosis but we have to wait for the pathology to be sure. My daughter is currently in pain from the surgery, but my fingers are crossed that she will start feeling better soon.


----------



## Michellejk

Another update. My daughter is 1 week out from laparoscopy and her pain has started to worsen. Went to doctor today. No signs of endometriosis or cancer. Cyst was dermoid. Doctor said she looked around and noticed her colon was distended which is common in IBD and IBS. Recommended for us to see another gastro doc for 2nd opinion. She feels as though she has done everything she can as a gyn. Guess we will wait until after the holidays and see if pain is any better and if not we will continue this frustrating heart wrenching journey.


----------



## Catherine

Michelle I suggest you get the ball moving with GI now.

I have done a little research on adhesions and their causes as my adhesions of unknown origin have come back.

Adhesions of unknown origin with bowel involvement suggest Crohn's is a possibility.


----------



## CarolinAlaska

Michellejk said:


> Another update. My daughter is 1 week out from laparoscopy and her pain has started to worsen. Went to doctor today. No signs of endometriosis or cancer. Cyst was dermoid. Doctor said she looked around and noticed her colon was distended which is common in IBD and IBS. Recommended for us to see another gastro doc for 2nd opinion. She feels as though she has done everything she can as a gyn. Guess we will wait until after the holidays and see if pain is any better and if not we will continue this frustrating heart wrenching journey.


Michelle,

I'm sorry your daughter is suffering.  Is ahe on her menses this week?  That might make her belly pain temporarily worse.


----------



## Michellejk

No, it would be nice if that was the case though.


----------



## Michellejk

Catherine,

 We will be going to see another gastroenterologist but will wait until she is healed from her laparoscopy first.  Poor kid is so tired and frustrated with doctors.  This one suggested removing dairy, gluten etc which was one of the first things we did over a year ago without any results.  Then suggested the Paleo diet.  We have done ALL of this, my daughter has had this pain since June of 2015. She has been tested for gluten multiple times, no matter how many times we tell them that she is negative, everyone seems to have to check for themselves.  I am so... over doctors!!!!


----------



## CarolinAlaska

Michelle, I can totally relate to that.


----------



## pooksmom

So I am confused and all the big words the Dr. uses to help reassure me dont help. It might be nothing but let me   put a camera up his but and see?  
 '' has he been abused?" they ask ? I AM SURE 100 PERCENT HE HAS NOT. weird question for me to hear  from a doctor? Doesnt everyone think so though , who thinks there kid has been abused. I mean I am not a simple person.. so I rethink his life and no...unless at school ,thats crazy right.. what exactly does an anal fissure in the 7 oclock mean .   I am not even there yet. what about that time he had hernia surgery and I was worried they could have  stole a kidney , they could have, How would I know?Shouldnt we be allowed to watch surgery on our kids? Anyway moving on..the primary doctor asked me about abuse... while side stepping all indications he needed to see a GI 
 It is with mixed reaction that I report luckily /unluckily that they did want a stool sample (the 2nd one ) to run "more test" so he at that exact sample time, pooped out what looked like two aborted fetuses  pardon my bluntness this is all new and shocking. 
 So I call the doc and say hey I got you that  stool sample but it looks like he pooped out a liver (this is where they tell me he was negitive for blood in his first one ) Great I say . except ...I can tell you this one wont be. Oh they are not testing for blood in this sample. I feel awful for the poor techs. Anyway they send my son to the ER , i take the sample cause someone needs to see it ,right,? 
 The ER doc gives me my first real clue something is WRONG. like really. autoimmune , he expeled some of his intestinal lining. So here I am waiting for tuesdays colonoscopy. Knowing nothing about test they have run already except his red blood cells are small so they are looking into a genectic form of amenia but want  more test next week.And the first test showed no blood in his stool. <eye roll> He is 11.


----------



## CarolinAlaska

I'm so sorry you and your son have boarded this nightmare train.  I wish I could tell you how to safely get off.


----------



## pooksmom

So ,mY 11 YR baby boy has a DX of Crohn's. What now?


----------



## Farmwife

I so sorry to hear this. 
When if his follow up appointment? 
Do you know any pacifics of what they found during the scopes?
What did his doc have to say about medicine?


----------



## pdx

pooksmom said:


> So ,mY 11 YR baby boy has a DX of Crohn's. What now?


Sorry to hear about your son's diagnosis.  His doctor should schedule a followup visit with you to talk about treatment options.  You'll find a lot of good info about all the options here on this forum, and feel free to ask questions here too about them too.


----------



## pooksmom

Farmwife said:


> I so sorry to hear this.
> When if his follow up appointment?
> Do you know any pacifics of what they found during the scopes?
> What did his doc have to say about medicine?


The scope shows 'blisters' in the bottom end of the colon and on the lower part of the  ileum His esophagus show so swelling . The calprotectin test had numbers over a 1000, she said. He had an MRI yesterday result will be back monday. 

 In the mean time he was in pain and not being treated with anything. I took him to his primary and they put him on Pentesa They could not do anything t they said, for his anal fissue except anusol ,which did nothing. I got him the spray that they give woman who have been cut or tore doing childbirth durablast and that really helped him with that part . So far I am very disappointed in the care he has gotten and I know that the only reason he has been dxed this fast is because the ER doctor I took him to, just about had him admitted to an out of network hospital. They followed his intrustions of getting him into a GI within 24 hours. So he backed down. After that however they are back to playing games . his  GI wants to phone consult his treatment plan to me on monday. This is our first real conversation about what is going on so I want a face to face.

 He is anemic ,with very high CP levels.. He has lost weight 10 pound since 11/25 16. 4 of those from 12/14/ tp 12/27.

 Definitely less pain since the pentesa but now he is going 2 or 3 days without pooping and then pooping a massive amount. Which triggers the pain all over again. I decided to give him stool softeners least night to ward off that issue . However, I worry I might do harm my making a wrong move or meal or food choice. and I do not have a lot of faith in the doctors of this disorder. They do  not know what causes this . Here it was it does but it is different for everyone... does not seem to be a lot of science issue concerning the doctors words and what they say ,imo. Early in the game for me so maybe that is a rush judgment.


----------



## Farmwife

Your reaction is completely understandable.
We've all been there and it will get better in time. 
However his care is down right unbelieving. 
Can you seek a second opinion? 
No primary doc should have to do what a pediatric GI should be doing. 

Also now that there's a dx can you make a thread in the parent forum. 
You'll get more views and replies that way.


----------



## Michellejk

Update with my daughter.  I would say she is 60% better with the adhesion and cyst removed.  She still has fatigue, but not as severe.  She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain.  We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors.  Thank you all for all of your kind words, advice and letting me know I wasn't alone.


----------



## CarolinAlaska

Michellejk said:


> Update with my daughter.  I would say she is 60% better with the adhesion and cyst removed.  She still has fatigue, but not as severe.  She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain.  We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors.  Thank you all for all of your kind words, advice and letting me know I wasn't alone.


Yea for a break from doctor appointments.


----------



## Farmwife

I glad for the reprieve in pain. 
I hope it continues for along while!


----------



## MissLeopard83

Michellejk said:


> Update with my daughter.  I would say she is 60% better with the adhesion and cyst removed.  She still has fatigue, but not as severe.  She still has nausea daily, some stomach pain (but more manageable), constipation is still a problem, no more headaches (woo! Hoo!), still has back pain.  We will be scheduling another Gastro appointment, but for now, we are relaxing a bit from doctors.  Thank you all for all of your kind words, advice and letting me know I wasn't alone.


I had an ovarian cyst, as well, and I originally thought the symptoms were GI related as did my PCP.  My gynecologist didn't even visualize the cyst on pelvic ultrasound as it was slow-leaking.  When I had my laparoscopy/hysteroscopy/D&C in October 2016, his preliminary diagnosis before surgery was endometriosis.  Not the case - it was an ovarian cyst which caused a big surprise and endometrial hyperplasia.  Getting the cyst removed made a HUGE difference for me and I am so glad your daughter is feeling better after getting hers removed.  I hope you can get answers as to why she is continuing to have symptoms.


----------



## braveheart

I've had Crohn's Disease for more than twenty years and now I am very worried about my little son.  

He is only 4 years old and I think he is starting to show some symtoms of IBD.  He doesn't eat very well and seems to have nausea all the time. He belches many times a day not only after meals.  He vomits almost once in a week.  We are doing an effort trying to give him the foods that like him most but problem is the same.   Quality or his stools are not always good he has a very light diarrhea often.  I think he has eye-bags (my wife says I am wrong, his skin is just a little pale and looks like having eye-bags).

On the bright side he is very active and never ever said he had pain.  And I've never see blood on his stools or vomits.

We visited two pediatricians and they say all the problems I described are very common for healthy kids at his age and does not mean he has any heath problem at all.  He lost 4 ounces during the last 4 months, which is nothing to worry about according to doctors.

I can perfectly understand that kids can have tantrums at mealtime and we are doing an effort trying not telling him of or push him to eat, but I think those tantrums cannon last several months.  Also if he refuses to eat (or eats very little) at lunch time he would be a bit hungry at dinner time and that is not happening.  Moreover I do not think that having a very slight diarrhea could something a kid can do on purpose or something emotional.  I know kids does things to challenge/manipulate parents but if that is the case my little son is one of greatest psychopaths of history 

As you can see I am very worried about this situation.  My wife thinks I am a bit paranoid with this but I think I have many reasons to be worried.  I've seen that 20% of Crohn suffers have a closer relative who also have IBD.  In my case I do not have (still) any relative but my father has Arthritis, which is also a problem with the immune system.

I think I may try to go back to the pediatricians to see if they can suggest an ultrasound scan or something to explore more.  I don't know how kids are diagnosed.  It looks like unless you come to ER with a bowel blockage and end up in an emergency surgery they are not diagnosing anything.

Any feedback is appreciated.  Thank you.


----------



## my little penguin

Kids that age can live on a single pea for days
That said 
A stool test fecal caloprotectin is not invasive and can tell you if inflammation is present 

Getting full quickly 
Vomiting once a week 
Sounds like my sons gastroparesis 
Delayed gastric emptying

Tagging maya142 
There are a lot of things that can cause GI issues 
Can you get a referral to a pediatric GI at a major university hospital ?

They can check things out 

More for you and keep an eye on him 
To determine if any testing is needed


----------



## Maya142

It could be Gastroparesis (delayed gastric emptying). The symptoms usually are early satiety (getting full after a few bites), nausea, vomiting, stomach pain (often after meals), weight loss, reflux. Not all kids have every symptom - my daughter's main problems were extreme nausea and weight loss.

It can be diagnosed with a gastric emptying test. The kiddo eats eggs mixed with a radioactive tracer and pictures are taken over the next 4 hours to see how fast the meal empties from his stomach. If more than 10% of the meal is left at 4 hours, then the child is diagnosed with Gastroparesis.

It's a fairly easy test - just long and boring (at our children's hospital, my daughter got to watch  movies during the test, so it wasn't so bad).

It's worth asking about. I'd also ask for a fecal calprotectin - that will tell you if there's inflammation in his gut and whether scopes are needed. It's a simple stool test and non-invasive.

Good luck!!


----------



## braveheart

Thanks Maya and My Little Penguin.

Gastroparesis, I never heard about it.  It seems like a very soft version of Crohn's Disease.  Is there a treatment for that?  What do you do to deal with it?


----------



## Maya142

It is not a kind of Crohn's disease, it's a motility disorder. Motility medications (like Erythromycin, Domperidone) are used.

It's a completely different condition, not related to Crohn's disease at all (usually).


----------



## braveheart

Thanks Maya.

I will let you know how it goes and what the doctors say.


----------



## Lucia22

Hi, I posted in the summer about my daughter who has bad stomach pain, gastric reflux, chronic constipation, constant nausea, chronic fatigue, blue/white toes, palpitations, fast heart beat, dizziness, hypermobility and  heel pain. She had an endoscopy and colonoscopy last year. Calprotectin levels were very high. Investigations appeared normal and the doc diagnosed IBS and discharged us from clinic. Rheumatology also discharged her. That would all be great if she wasn't feeling worse, with more frequent symptoms. She now feels faint a lot and see shapes and colours with pixelated vision. Seeing a new gastro who wants to do a capsule endoscopy under a general and repeat Calprotectin. He said there is part of the bowel that can't be accessed by the usual tests but the first gastro said all was clear. Also suggested trying meds for abdominal migraine and antibiotics. However, my daughter's symptoms do fit in with POTs and I understand that stomach problems can be part of this condition.  I would love to hear from anyone who has dealt with anything similar. Thanks.


----------



## Farmwife

Have they looked at Ehlers-Danlos Syndrome?
The new gi is right.  The scopes can't see the whole bowel.
I'm glad he wants to investigate further. 
As far as I know,  ibs does not cause a high Calprotectin level.


----------



## Maya142

She could have POTS and IBD - I'd definitely do the pill cam, if her Calprotectin is high.


----------



## BoyMama2000

I would ask for a fecal calprotectin test to see if he has any signs of inflammation....that may help you to decide if further testing is warranted or if this is just something he will get through.  My oldest had those symptoms and does not have Crohns...my middle son has Crohns and never had gut issues young so we never know do we.  Best of luck to you and your son.


----------



## Lucia22

Thanks everyone for such quick replies. It's so good to hear from other parents in similar situations. Has anyone managed tto swallow the pill cam? I would rather she didn't have another general anaesthetic if possible but I heard the pill cam is large. The new gastro wants to do another endoscopy but I don't see the point if he can't see any further into the bowel.
I've also wondered about EDS but she doesn't get dislocations. Well not so far anyway but she does seem to fit the criteria for POTs as her heartbeat goes up a lot when she stands up. Can you have EDS without dislocations?  We can't find a decent rheumatologist. They just tell us they don't know what's wrong and tell her to exercise! If only she could.


----------



## Maya142

The pillcam isn't that big. It's the size of a large pill. Your daughter is a teenager, right? I think she'll be fine. My daughter was able to swallow it without any problems at 16.

Some doctors do place the pillcam in the duodenum during scopes - usually so they don't have to worry about it sitting in the stomach or for little kids who can't swallow big pills. 

But it depends on the doc and their preference.

There are also enteroscopies - like an endoscopy that goes deeper into the small bowel. My daughter has had two. They can't go through the entire small bowel unless they do a double balloon enteroscopy (which is slightly riskier - the risk for perforation goes up) but with a regular enteroscopy they do go further than a regular endoscopy.

If they are planning to do that, then I'd have the pillcam placed in her duodenum during the test, since she'll be sedated anyway.

A rheumatologist should be able to tell if she is hypermobile.


----------



## BoyMama2000

Two of my kids have swallowed the pill cams with no issue at all.  Once they put it in the scope so they could do the upper GI and then see the rest of the duodenum, jejunum and ileum.  It worked just fine as well.  I agree that you want to see the small intestine during any new study.

In fact, my youngest son (also without Crohn's but needed ruling out) swallowed it at age 14 without any water.  He said it was weighted and went down very easy!


----------



## my little penguin

We typically have an upper and lower scope done and at the end the GI places the pill cam in the duodenum 
This way we are sure to get good pics of the entire small intestine 
Because the pill cam can bob around in the stomach otherwise 

If it has been a year 
Well worth the new upper and lower scope 
Since Crohns and be patchy
When Ds was first dx the scope itself looked good
GI got lucky with samples that showed the inflammation on what he thought was healthy tissue

Wishing you the best


----------



## Katrina9

I hope you are able to get the dx you need as soon as possible. We were fortunate in that it took just 4 weeks from presentation of first symptoms (loose stools) on 11/1 - we thought she had a persistent stomach bug until we started seeing blood) to diagnosis. They quickly did blood work and stool samples and she had her colonoscopy and endoscopy on 12/1 and were able to dx ulcerative colitis. (Since then it's been a little back and forth between Crohn's and colitis).  For us, the scopes gave us the dx.  

As was said, given that you already have a child with IBD you would think that your docs would be pretty pro-active to check this out!!  Best of luck to you.


----------



## izzy26

Hi all, my four year old has had consistent high calprotection levels of over 600 (don't record here in the uk once over 600!) Has tummy pains, odd fevers of a night, back pain, very poor appetite,  slow to gain weight. Currently 11.1kg...colnoscopy/endoscopy shows inflammation of the esophagus but scan to check bowel.....is this crohns or GERD? SHE DOESN'T vomit unless travelling in the car, and mainly constipated xx


----------



## Okidli

Hi all - I am new to this forum and to these issues, although I have been reading a lot. My 9 year old daughter tested positive for Celiac in late January, 2017 but her GI doctor told me on the first visit she thought it was IBD "because you do not see blood in the stool with a Celiac". I explained to her that my whole family had a virus and some gastro issues - pain and diarrhea - and that was the only time my daughter ever had any blood. In fact, she has never had a symptom in her life. No prior stomach pains, no diarrhea or constipation, no other pains anywhere. She has been growing well, eating well and very active. Still, my GI doc insisted we do a calprotectin test and a colonoscopy. Her calprotectin came in very high (above 2000). BUT, when I asked to repeat it 10 days later, it was way down to 218. This also supported my theory that the blood was related to a viral gastro. However, they also found inflammation after the colonsoscppy. It was described as mild to moderate and they called it indeterminate IBD. Still, if she did have a Gastro, would we not expect some inflammation. My GI doc at CHOP has no answers. She told me to wait and come back in a few months!!! That seems crazy to me? We are just going to do nothing? Here is a healthy kid a few weeks ago and now we think she has Celiac and IBD? And we do nothing? I started a gluten free diet right away. It helped and the blood and diarrhea went away completely. She still does get mild, brief tummy aches either when she is hungry (which is ALL the time!) or while eating or an hour or two after meals. This often happens once or twice a day but we have also had days with no pain. She gets a little gas with the pain. It seems very minimal. Her bowel movements look totally normal. She has lots of energy, good appetite, no blood or mucous, no other symptoms except a little gas pain. Does this sound like anyone's experience at the beginning of IBD? Does anyone else have a child with Celiac and IBD with sudden but mild onset who was previously healthy from birth? I am so worried!!! Thanks!!!


----------



## Maya142

My daughter did not have severe symptoms either. She had abdominal pain and constipation. We honestly thought we were ruling out Crohn's with a scope. I was shocked when I got a call from her GI saying it was definitely Crohn's.

Kids with Crohn's can have a variety of symptoms. Some kids have diarrhea and bleeding. Others deal with constipation. Some don't have ANY gut symptoms and are only referred to the GI when there are growth issues. It really, really varies. After being on this forum for several years, what I have learned is that there is no "normal" presentation. There are kids who are asymptomatic but have had such severe inflammation that they needed surgery.

If you are uncomfortable with the doctor's diagnosis, I'd encourage you to get a second opinion - the big three hospitals for IBD are CHOP, Boston Children's and Cincinnati Children's.

We also go to CHOP. 

I think you have a couple options. You can choose to wait and see - redo her Fecal Calprotectin in a few months and see if it's still high. You can choose to get a second opinion or you can choose to treat her now.

Honestly, doctors don't diagnose kids with Crohn's easily, so biopsies must have shown chronic changes that are associated with Crohn's. 

I will tag some other parents so you can get some more opinions:
my little penguin
Clash
pdx
Mehita
crohnsinct
Tesscorm


----------



## pdx

Hi Okidli. I think I'd probably get a second opinion in your case. What test did the doctors do to diagnose Celiac Disease?


----------



## Tesscorm

With some kids (even adults), it can take quite a while to get a firm diagnosis, perhaps partly because symptoms can vary to such a degree.

My son was never sick...  Six months before diagnosis, he started with some symptoms...  but, sometimes, you (and/or doctors) don't see how the pieces fit together.

- on and off fevers and diarrhea - ped said there was a gastro bug going around
- canker sores - ped said possibly due to his new toothbrush
- night sweats - due to the fever caused by the bug
- weight loss and fatigue - caused by his body fighting the bug...
- fatigue - he'd just added a second phys.ed. class (2+ hours/day) plus played on two hockey teams
- gas

We had several follow-up apptmts with our ped and she ran bloodwork and a small bowel x-ray.  On one round of fever/diarrhea, we went to the local hospital where they did ultrasound.  All tests showed minor indications but not unusual with a gastro bug.

Eventually our ped suggested we go to the children's hospital rather than wait for a gastro referral.  We did and he was tentatively diagnosed within hours.  And, surprisingly to me!, it was my son's passing comment on 'canker sores' that clicked all the pieces together for the GI.

All this took almost six months.

My son had no pain, no bleeding, only lost his appetite when he had a fever, no nausea...

The symptoms can vary so much, it's not uncommon for a delay in getting a firm diagnosis.  Very frustrating!!  I would either start making arrangements for a second opinion or begin to keep a journal of all symptoms, even if it seems unrelated or justified (ie new toothbrush causing canker sores) and follow-up with your current GI sooner, rather than later.

Some other symptoms may be joint pain, anemia, heartburn...


----------



## Jabee

Celiac disease can be diagnosed fairly easily with an endoscopy and blood tests for antibodies to gluten. Most GIs recommend not beginning a gluten free diet before a certain diagnosis since going gluten free will (obviously!) heal things up. That said, if the GI wasn't sure what your daughter has/had, and wants to wait, then by all means go gluten free. The two diseases (crohn's and celiac) can co-exist (I have both), but if she is much better on a gluten free diet then I would continue with it. It sounds like she is much better, with symptoms that aren't bothering her too much, so I think Maya142 is completely right: it's your (and your daughter's) choice to wait and re-test or get a second opinion right now. I hope she continues to improve.


----------



## Okidli

Thank you to all of those who responded to my note. My daughter was doing well and then the daily mild pains became just a little more frequent over the last few days. Then she went from perfect poops to bloody D. Full on, 10 times a day. The diagnosis is hard to deny. Ow. I am so scared, worried for her and depressed. I am trying to stay strong for my daughter but when I am alone, I feel so devastated. We went to CHOP ER and they sent us home. I feel like we have been in waiting mode for months. Shouldn't they do something at this point? But I am scared of the drugs too. She is only 9 and 4 mo the ago was in seemingly perfect health. 

Also, any advice on diet through this flare (and beyond)? Since she is also Celiac, obviously no gluten.


----------



## Okidli

Maya142 said:


> My daughter did not have severe symptoms either. She had abdominal pain and constipation. We honestly thought we were ruling out Crohn's with a scope. I was shocked when I got a call from her GI saying it was definitely Crohn's.
> 
> Kids with Crohn's can have a variety of symptoms. Some kids have diarrhea and bleeding. Others deal with constipation. Some don't have ANY gut symptoms and are only referred to the GI when there are growth issues. It really, really varies. After being on this forum for several years, what I have learned is that there is no "normal" presentation. There are kids who are asymptomatic but have had such severe inflammation that they needed surgery.
> 
> If you are uncomfortable with the doctor's diagnosis, I'd encourage you to get a second opinion - the big three hospitals for IBD are CHOP, Boston Children's and Cincinnati Children's.
> 
> We also go to CHOP.
> 
> I think you have a couple options. You can choose to wait and see - redo her Fecal Calprotectin in a few months and see if it's still high. You can choose to get a second opinion or you can choose to treat her now.
> 
> Honestly, doctors don't diagnose kids with Crohn's easily, so biopsies must have shown chronic changes that are associated with Crohn's.
> 
> I will tag some other parents so you can get some more opinions:
> my little penguin
> Clash
> pdx
> Mehita
> crohnsinct
> Tesscorm


Thank you Maya142! Would you be willing to speak with me about your experience and advice? I know it is a lot to ask but I could really use the support of a mom who understands. Around me, I feel no one understands just how serious and devastating this is because my daughter still looks the same. Thanks so much!


----------



## Okidli

pdx said:


> Hi Okidli. I think I'd probably get a second opinion in your case. What test did the doctors do to diagnose Celiac Disease?


Thanks pdx. Do you (or anyone) have a doc you would recommend? I definitely want a second opinion now to understand and assess my options.


----------



## Maya142

I'll PM you Okidli.


----------



## seoreh

My son is 9 and a couple of months ago started having nausea, horrible stomach pains, diahrrhea, cramping, it subsided and came back a few weeks later, it went away again and came back- after 3 times I knew this wasn't a regular stomach ache. We went in and had ultra sounds, x rays, blood work but the only this abnormal were inflammation markers in bloodwork.  He is yet having a flare after eating some chicken, and crying with nausea. WE have been referred to a GI doctor and will go this week. I feel awful because I was trying to give him a very plain diet based on " breaking the vicious cycle" book, but he ate this chicken and is flaring. ANy advice would be very helpful. thank you so much!


----------



## CarolinAlaska

seoreh said:


> My son is 9 and a couple of months ago started having nausea, horrible stomach pains, diahrrhea, cramping, it subsided and came back a few weeks later, it went away again and came back- after 3 times I knew this wasn't a regular stomach ache. We went in and had ultra sounds, x rays, blood work but the only this abnormal were inflammation markers in bloodwork.  He is yet having a flare after eating some chicken, and crying with nausea. WE have been referred to a GI doctor and will go this week. I feel awful because I was trying to give him a very plain diet based on " breaking the vicious cycle" book, but he ate this chicken and is flaring. ANy advice would be very helpful. thank you so much!


Feeling responsible for our children is a normal response, but remember that you didn't choose this for him.  You are his biggest advocate and support.  I know it isn't easy.  I hope you all can figure it out quickly with the GI's help.  I'm sorry you had to find us, but this forum is a great place for support.


----------



## seoreh

Is feeling tired generally part of inflammatory bowel diseases? I suppose it differs with every child and situation.


----------



## Maya142

It's definitely common - inflammation can cause fatigue, anemia is common with IBD and causes fatigue etc.

Hang in there - hope the GI has some answers.


----------



## pdx

Hope you get some answers soon, seoreh.


----------



## lively_child

This is my first post, so I will try to keep it short, and any suggestions are appreciated .  I only hope our journey through doctors and misdiagnosis and medicines can help others like this site has helped me.  This thread appears to be for kids that are currently undiagnosed and I thought I would share my son’s symptoms. It took almost a year to get diagnosed because of his strange symptoms that now make up the “puzzle”.

My son first showed major symptoms when he was 15.  Prior to this he was very healthy.  He had been  sluggish for about a year, but we thought it was just teenage laziness. He never had diarrhea and had constipation problems since he was a baby.  I think for this reason Crohn’s was overlooked…and the fact that he is super quiet and rarely complains about physical discomfort.

It started with chest pains, saying it hurt to eat. Doctor told us was heartburn and sent him home.
2 weeks later, my son was not eating much at all and the doctor then did ultrasound/labs and found his gall bladder was slightly swollen, he was anemic and his inflammation markers were high. Doctor was convinced it’s gall bladder related.

Before anything was done about the gall bladder (thankfully) he was in the hospital for 9 days because of weight loss and dehydration. While in hospital an endoscopy showed that he had severe erosive esophagitis.  The doctors were thinking GERD or EOE was the cause. 

They sent us home and treated us for GERD with large amounts of PPI’s (Nexium and Prilosec).  Over the next 6 months, he kept taking the meds and he kept telling me they didn’t help and continued to get sicker. The anemia getting worse, more weight loss, less appetite, severe leg cramps and no energy at all.  Finally, I got fed up with the doctor not listening or doing anything to help. We quit the PPI meds (slowly I should add) that were obviously making him worse and found a new GI doctor because I knew it wasn’t GERD and this Dr. just wouldn't listen.

We visited the new Dr. and I was so relieved when she seemed genuinely concerned and insisted on full lab testing for nutrition an endoscopy and colonoscopy. A week later after the scopes she was sure it was an IBD.  After a CT scan, confirmed the moderate to severe Crohn’s. It only took a new Dr. that was willing to take a look at all the "puzzle" pieces to get a diagnosis. She had him feeling better within 2 weeks of the initial visit.

My Son is much better today.
His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.  

Don’t be afraid to get second opinions, push for testing if you think it’s necessary and ask questions.  And do your best to keep a copy of all test, lab and scope results, this has helped me numerous times. 

Mom of I (16) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Vitamin D supplements
Iron Supplements

Past Treatments:
Imuran
Prednisone
Nexium
Prilosec


----------



## pdx

lively_child: Thanks for your post, and I'm so glad that your son is already doing so much better now that he has been correctly diagnosed and treated!


----------



## Carolina*

Okidli said:


> Thanks pdx. Do you (or anyone) have a doc you would recommend? I definitely want a second opinion now to understand and assess my options.


How is your daughter doing these days? My 10yo daughter has had a similar path including the celiac/IBD diagnosis at once.


----------



## kjb

Hi Everyone,

First, let me say hello and thank you so much for creating a very helpful guide to all the parents of undiagnosed kids. I have pretty much read the whole thread over the past few weeks. I kind of feel like I know you all now!

I am also writing to seek help - any suggestions are very welcome - with my 16 year old daughter who has now been unwell for about 6 months and missed the last 4 months of school. Fortunately it is now the end of the school year here (Australia) and we are hoping for something/anything to occurr before the end of January when school all starts up again.

My beautiful girl has: constant pain (same spot always by her belly button, pain 24/7 and enough to wake her at night), vomitting at least 2-3/7, fevers at least 2/7, anemia, joint pain, mouth ulcers, very very darkbrown poo (apparently NOT black!) and D up to 30 times per day. She also smells different - like an organic/benzene/toluene/chemistry lab type smell about her that was never there before.

She has had blood tests (normal), faecal tests (normal), scopes and biopsies (normal), and pill cam (normal). Was initially diagnosed with IBS so spent a month on FODMAP (no change) and has even tried hypnotherapy sessions for the 'mind-gut connection'. No difference. She was never stressed, anorexic or on laxatives - gee the things people (including medical people!!) say hey!! 

The GI has now said that he thinks its not IBS but rather an auto immune 'thing' - but they can't put a label on it. 

My girl is now taking Questran (2 sachets per day) to stop the D and is on Lyrica (75 mg twice a day) along with codeine to stop the pain. The codeine has to stop in another week and she has also been given a script for Endep which she can use after the codeine is she wants/needs to. These drugs have stopped the D and have improved her quality of life but the pain (belly and joint) returns about 3 hours before the next lot of drugs are due.

We have an appointment for an intestinal ultrasound in January and then I suspect we will have worn out our welcome!!

There seems to be a huge wealth of knowledge here so i though't I'd throw my hat into the ring and see if anyone might be able to suggest anything! I hope that someone might have some ideas to help us!!

KJB xx


----------



## my little penguin

If they are thinking autoimmune
Have they sent her to a rheumatologist 
That would be your best bet 
Some autoimmune disorders cause gut issues but are not Crohns 
Especially rheumatologist are better at dealing in the “gray areas” 
Did they do an mri ?
What happens when she stops food ?
Has she tried exclusive enteral nutrition (formula only no solid foods )
It’s as effective as steriods for the gut but won’t fix auto immune issues
Tagging Dusty 
Catherine


----------



## kjb

Hi my little penguin and thanks so much for your quick response and tagging some of the other stars of the site!

We haven't been to a rheumatologist at this stage. She needs to go and get a vasculitis blood test and then has the intestinal ultrasound in January. I was a little surprised that she wasn't offered an mri but I gather the intestinal US looks for inflamation and is good at differentiating between CD and UC and also can be used to identify vasculitis issues too??

When she stops eating it does help her guts - but it certainly doesn't take all the pain away. She has been through periods of not wanting to eat - or preferring just a liquid diet - but I gather that doesn't help with identifying inflamation if there is an IBD issue so I am trying to encourage her to eat as much as possible before the IUS in January. She has also had significant pain in her oesophagus which has made eating difficult. She lost about 5 kg (10 lb) when this all kicked off but has slowly managed to put some it back on once she was on the liquid supplements.

Please keep the questions coming! Again, like many here have mentioned, I don't want to look like a neurotic mother, but this is my baby girl and I need her to be well and happy again.

All the best xx


----------



## my little penguin

Pain in her esophagus?
Did they do an upper endoscopy as well ?
Looking for signs of (EoE) eosinophilic esophagitus ?
Ultrasound is just cheaper than an mri not necessarily better 
Some are trying to use it for imaging in places like the U.K. 
the standard of care in the US is still mri with Enterography

Have they looked at Behcets ?
Egids can cause issues as well that would include EoE


----------



## kjb

Hi again

Yes, they scoped both ways - nothing remarkable other than a nodule (which still wasn't considered remarkable) and that she had some visible 'gastrits'. To be honest I don't know what biopsies were done but everything was returned as clear.

Immediately after the scope she was diagnosed a having GERD and put on nexium but it did absolutely nothing to help so stopped taking it (especially with the recent news coverage of links to cancer). She had never complained of heartburn and, at that time wasn't vomiting like she is now.

Having just read about Bechets I guess it is possible but no eye, lung, skin or genital ulcerations and as far as I know no brain or heart issues. I imagine if the vasicullitus test comes back abnormal then that may be something to look in to......

Thanks again for the ideas

K


----------



## Farmwife

Hi and welcome
Your poor kiddo.
The Gerd meds, how long was she on them?
When she drinks " liquid diet, " what type of liquids is that?
Had she done that before the scopes.


----------



## kjb

Hi Farmwife and thanks for your reply

She was on Nexium for the entire course/packet (not sure how long it lasted sorry as it was back in September.

Liquid diet was Sustagen and Resource (at different times). Hated Resource as too sweet but likes Sustagen and is happy to live on it. She was hospitalised for a few days and they put her on Nutrica Fortisip but she really disliked that one.

I can't remember exactly, but I suspect that she had been at least suplementing her diet before the scope. She seems to really struggle with grains - rice and pasta come straight through - but has tried to eat more 'food' than 'liquid' lately. Some days are just bad and she sticks with the sustagen then.


----------



## Farmwife

Ummm mm..... Just a thought, remember not a doc just a mom.

I wonder if gut rest before the scope could have change (or healed) what was happening. 

I know Grace couldn't be on steroids for 8 weeks before her scope. 
They  wanted to see what was happening before treatment started.
Formula or EEN can be used in place of steroids for healing the gut when first diagnosed. If course that doesn't work for everyone.


----------



## kjb

OK thanks

I have actually read about such an idea in this thread and wondered about that too....

She has the ultrasound on 17th Jan so how long beforehand should she try to stick with a normal diet? It is pretty hard when they feel so poorly though to say you have to eat.

K


----------



## Maya142

I would push for an MRE or pillcam. Sometimes IBD can hide in the small bowel and an ultrasound really isn't accurate enough to tell you if it's there. Symptom-wise it certainly sounds like it could be IBD, so I would make sure they check the small bowel.

There are several parents here whose kiddos have mostly small bowel disease and have been diagnosed using a pillcam (capsule endoscopy) or MRE.

I would also see rheumatology - many autoimmune diseases can involve the gut. Does she have any joint symptoms - pain, stiffness, swelling, redness or warmth?


----------



## kjb

Hi Maya142

Thanks for contributing to our story!

Yes, she has had a pillcam already - showed nothing out of the ordinary. When she was in hospital she was meant to be given an MRI (not sure if the same as MRE?) but it didn't end up happening. They are now wanting an intestinal ultrasound and has been booked in. I rang querying this yesterday (as she had already had an abdominal ultrasound way back when it all began) but was told, no, this is what he wants to do. I feel pretty useless here as clearly I can't organise a MRI for her and have to wait to see what the GI wants to do next. 

I kind of feel like we are part of a game at times. Do this and see if anything changes. Take that and see what happens. I understand that this is not a straightforward thing but it is wearing us down a bit. At least my girl is on some pain relief and anti-D meds now and that has certainly improved her quality of life. As I said to the GI - If she were the family dog we would have had to have her put down by now. I'm not sure if he saw the funny side but, as you all know, you either laugh or cry sometimes.

She definitely has joint pain (and has all along). She was an all star cheerleader and had to stop training about 5 months ago which broke her heart. Especially as her team went on to win their division of the Nationals and she has also missed the chance to travel to the US next year to compete there. Pook kid 

Keep those ideas coming please!


----------



## Maya142

Sorry, I missed the pillcam and the joint pain. So with her joints, which ones hurt? Do they still hurt now that she has stopped training? 

There is a type of arthritis called Spondyloarthritis (SpA). It is associated with IBD and there are people who have both spondyloarthritis and IBD. But there are also a lot of people who have spondyloarthritis but have "subclinical gut inflammation" but not full-blown IBD. So they have mild inflammation in the gut which is often asymptomatic but can cause symptoms like abdominal pain and diarrhea. A very high percentage of people with SpA have gut inflammation without symptoms - something like 60-80%. A much smaller percentage have actual full blown IBD - something like 8% I think.

It is not as bad as full blown Crohn's but is usually seen on biopsies. Some people also have small ulcers. Generally, it is found by scopes/MRE/pillcam.

Any joint can be involved in SpA but it is common for the lower limb joints to be involved - knees, ankles, hips etc. Sacroiliac joint or spine pain is also very common. But honestly, any joint can be involved - from fingers to the jaw to the toes.

Has she ever had any motility testing? That is something else I'd consider given the vomiting. My daughter has Gastroparesis - slow gastric emptying - as well as Crohn's. Her Gastroparesis symptoms were loss of appetite, feeling full after eating just a few bites, nausea after eating, pain after eating, weight loss and occasional vomiting.

People with Gastroparesis often are able to tolerate liquids better than solids.

An MRI is different from an MRE. An MRE is specifically for the bowel:


> << Back to Gastroenterology Tests and Procedures
> What is magnetic resonance (MR) enterography?
> 
> Magnetic resonance enterography is an imaging test that lets your doctor see detailed pictures of your small intestine. It can pinpoint inflammation, bleeding, and other problems. It is also called MR enterography.
> 
> The test uses a magnetic field to create detailed images of your organs. A computer analyzes the images. Before the test, oral and intravenous contrast dyes are given to highlight the small intestine. A drug will also be injected to decrease movement of the bowel which can interfere with the images.
> 
> This is not an X-ray. It does not involve any radiation. The oral contrast doesn’t contain any radioactive material. The images from this test are quite detailed. The procedure may take around 45 minutes.


----------



## Maya142

Also wanted to ask, what helps more, the codeine or the Lyrica for her pain? It looks like Endep is Amitriptyline - it is a tricyclic antidepressant. In small doses, it is used for IBS pain or functional abdominal pain. Some kids find it very helpful.

Has she had any immune testing? Tagging DanceMom.


----------



## kjb

Hi again

Joint pain is why she stopped training (along with everything else really!). The pain has been largely in wrists and elbows but also in necka and back. Her cousin (my sister's son) has JIA and the GI is aware of that.

She has not had motility testing. Her issue is chronic D with up to 30 trips to the bathroom each day before being put on Questran a few weeks ago. That improved everything after the very first dose. I gather that is a Bile Acid/Salt malabsorption issue. If she eats anything too fatty then she still is no good - ate too much cheese last weekend and leaked something afwul.

Not sure about the Lyrica/Codeine balance. She has to wean off the codeine now so I guess we will find out and I'll let you know. We spoke this morning of just taking a dose in the morning and skipping the night time one to see how she goes. She hasn't had the Endep as yet - we have a script and will only fill it if the Lyrica isn't able to keep her pain levels down. I gather it works in a different way to Lyrica.

She was put on Axit a couple of months ago (also an old antidepressant) but that made her D much worse (up every 90 minutes during the night and then all day as well) so she stopped after 3 days.

No immune testing has been done at this stage. I'm not sure that they know what to do with her!!

Thanks to everyone for helping us with this matter

K


----------



## Maya142

The chronic diarrhea doesn't really fit with Gastroparesis. But the other stuff does. But I don't know, to be honest, because symptom-wise it sounds most like IBD to me. But the negative pillcam and negative scopes suggest something else.

It's possible that there are multiple issues going on too.

In terms of IBS, what medications did she try? Did she try Levsin or Bentyl for the pain? My daughter has Crohn's and Gastroparesis but finds Levsin (which is an anti-spasmodic) really helps with cramping abdominal pain.

I was wondering about Lyrica vs. codeine because I was wondering if amplified pain could be an issue. Amplified pain is functional pain - pain with no real cause. It can occur after a minor illness or long-standing inflammation or a number of things. Essentially it is over-active nerves, sending the brain pain signals when there isn't actually anything causing pain. Or they are sending disproportionate pain signals - for example, if there is a little inflammation but the child is a feeling a LOT of pain. Generally opioids do not work well for amplified pain but anti-convulsants/anti-depressants like Amitriptyline and Lyrica do.

But it does seem like in addition to the pain there is something else going on that is causing the diarrhea.


----------



## kjb

Hi again

The only medication that she had for the IBS was colofac (antispasmodic). This seemed to help at first but then she eventually stopped taking it as it wasn't doing anything more to help. 

It appears that codeine is the one doing the most for her. She said that she forgot (?) to take Lyrica the other day and it didn't seem to make much of a difference to her pain levels - but she had taken the codeine. She was started on 25 mg of Lyrica but then was put up to 75 mg. She doesn't really have cramping pain - just pain. Apparently it can get stabby when it gets worse, but there is always this dull background pain (pre codeine, but better post codeine). I'm kind of hesitant to start her on Endep as many of those drugs are addictive (as is codeine I know). I'm not really sure but I guess we have to see what happens when she comes off the codeine first.

The amplified pain issue is clearly something to think about. She was referred to a hypnotherapy group for 'over sensitisation' of pain but they essentially said that they didn't think she was suffering from that. I'll have to ask her more about it tonight when I am home. She went twice, but by then the GI had said we don't think you have IBS anymore so the psychologist wasn't quite sure where to go. The kid isn't a stress head and even the psychologist that she saw stated that she seemed perfectly fine re anxiety and depression.

Thanks team!
K


----------



## Maya142

Unfortunately, codeine is not a drug you want her on long-term unless she absolutely needs it. My daughter has been on opioids because of severe autoimmune arthritis (Ankylosing Spondylitis) and they honestly cause as many problems as they solve.

Amitriptyline and Lyrica are much less dangerous to stay on. I would suggest seeing pain management while you are trying to figure out the cause of her pain. They can help you figure out what meds to keep her on and what to try next that isn't addictive. 

My daughter also has amplified pain syndrome - she ended up doing an intensive inpatient pediatric pain program to help re-train her nerves and to teach her to cope with chronic pain. It was an incredible help and taught her a lot.


----------



## kjb

Great - thanks for the advice re codeine. 

I think a trip to a pain clinic is on the cards as I suspect that when she comes off the codeine the pain is going to ramp up again. 

I'm sorry to hear that your daughter has had such a rough time too. We go along in our own little bubble until something like this happens and then you get a very different view of what is important. My nephew with JIA also attended a pain clinic to help him.

My girls symptoms do sound a lot like IBD to me too but, as I said to my girl, you can't call a ham sandwhich a ham sandwhich unless you have ham. IBD without inflamation is just not IBD. Perhaps the test in January will find something. Even better it might all just resolve itself by Xmas (hopefully!!). It really is all I want for xmas........................

Thanks again for your help and support

K


----------



## Maya142

There are some kids who really do very well on Amitriptyline for pain. It's used quite a lot for IBS here and for migraines and amplified pain. So I hope it will at least control her pain a little bit.

My daughter was on the sister drug, Nortriptyline. Unfortunately, it didn't work for her. But the only side effect was mild constipation which might be a good thing for your daughter!

Sending hugs. Hang in there. If you make your own thread on the main Parents' forum, you will get more responses. This is such a long thread that sometimes people don't look here.


----------



## kjb

Thanks again for your reply and advice - much appreciated!

I guess we will just have to wait and see how things go once she comes off the codeine. Fortunately, she has finished for the school year so can afford to have a few days of not feeling too wonderful to run these 'experiments'.

Given your suggestion I will get the Endep script made up and have it ready if she needs it.

Once again I am very grateful to you for your advice and help - I will post again in a new thread if we need some more ideas but given that I have started here I'm not sure if/how it is possible to grab these posts and put them into a new one??

I hope that you and your kids have a wonderful holiday period and that 2018 brings better health for everyone. Lets hope that it is a great year for us all!

Cheers
K


----------



## lively_child

Farmwife said:


> I wonder if gut rest before the scope could have change (or healed) what was happening.
> 
> I know Grace couldn't be on steroids for 8 weeks before her scope.
> They  wanted to see what was happening before treatment started.
> Formula or EEN can be used in place of steroids for healing the gut when first diagnosed. If course that doesn't work for everyone.


IMO only...I agree with Farmwife.  If it is Eosinophilic, celiac or IBD related and if being on a liquid diet is helping her symptoms then it could be helping into a remission and causing the tests to look better than normal.  It might be a good idea to have her eat normal at least a few days before a test.  Sounds like cheese/greasy foods might be a trigger and I would incorporate gluten as well to check against celiac or eosinophils reacting to one of those foods.  Our GI told us to eat gluten before my son's scope, because avoiding it would make it harder to diagnose celiac if that was the problem. 

Another thing I would suggest is to think about looking for another GI doctor.  My son went undiagnosed for almost a year, and then it only took another Dr. looking at his case and she had him diagnosed within 2 weeks.  You may have an awesome GI doctor but sometimes a fresh look from a different doctor makes all the difference.

Again, this is my opinion only. Best of luck to you.


----------



## my little penguin

You need a normal diet for weeks before scopes not formula only them food a few days before 
That heals the gut 
It’s proven to work which is great but you don’t know what your dealing with 
Then

They should have told you 
Treatment for ibd /celiac /eosinophilia etc is formula only or avoiding wheat etc...
This means you were treating something 

2 months of wheat for a valid celiac test of 1-2 slices of bread a day


----------



## kjb

Dear Lively_child and MLP,

Thanks again for your ideas - it means a lot to me to have this support from around the world!

Unfortunately we were not told about the liquid diet being something that can 'mask' infammation so it may be just that. Or not ???? Unfortunately we also were not told about stopping gluten before taking a coeliac test. My girl went gluten free about three years ago as she believed it was upsetting her tummy. If only we had known to get a coeliac test before stopping!! Now the smallest amount of gluten (even the tiniest amount in a small amount of soy sauce) send her into a richtus. Within maybe 30 minutes she is doubled over in pain and it can make her vomit or have D. Given the need to eat a significant amount of gluten to be tested for coeliac, this just isn't going to work for her. I can't ask her to eat and be in even more pain than what she has been suffering these past few months. It is easier to just stay gluten free given that is the treatment option anyway. Her recent scope showed negative for coeliac, however, that was not surprising given that she hadn't eaten anything with gluten in it for years (unless by accident!).

Ah these kids - we love them to death but they cause us to go grey early!!

Lively_child, if it isn't too personal, may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?

Once again, thank you for taking the time to write back to me!

Cheers
K


----------



## lively_child

kjb
I attribute the long time to diagnose to a few different reasons:

1. We were at a good hospital but could never get a doctor to take us seriously.  He was admitted into the hospital for severe chest pain, dehydration and malnutrition for over a week before they agreed to do an endoscopy.  Then they diagnosed it erosive esophagitis caused by GERD.  For many months, they would not listen to my concerns that this diagnosis was wrong and that the medicines were not working.  I knew the Dr's there had made up their mind on a diagnosis and were not budging easily.  They even reprimanded us when we said he stopped taking the medication because it wasn't working at all and seemed to be making him worse!  I researched and found a Pediatric GI doctor that had great reviews.  The first time we visited she was very concerned with his test results and insisted on full bloodwork, and a full scope from top and bottom.  The endoscopy still showed signs of erosion but the colonoscopy showed even more.  It took the right tests to find it, BUT what it really took was a Dr willing to order the tests.

2. My son extremely under emphasizes his pain and symptoms (big strong man, you know).  I knew he was very sick. But when the Drs talked to him, not knowing his demeanor, they assumed it wasn't that bad.  After the scope the Dr. asked me if it was possible he had drank an acidic cleaner, she just couldn't believe how bad the damage was compared to his lack of complaining. 

3. His symptoms were not necessarily typical to Crohns. In fact constipation was always a problem from the time he started eating real food. Since diarrhea is red flag symptom, and he did not have diarrhea, they did not suspect Crohns. His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool. 

Mom of I (16) diagnosed at 15


----------



## crohnsinct

kjb said:


> Dear Lively_child and MLP,
> 
> may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?


Hi there!  I have been following your situation from afar.  I haven't commented because I am not well versed on differential dx's and you are in great hands with Maya and MLP.  

I just wanted to say that a long time to dx is pretty much the norm with IBD and all things gastro.  There are just so many things it could be, IBD although on the rise is still not a mainstream illness and not the first suspect, and to complicate matters pediatric patients do not all present the same way or in the usual way.  The dx usually comes quickly because disease was left to simmer for a long time and the kids end up in really bad shape.  

Keep on fighting for your girl.  You know something is wrong, you just don't know what.  Make them figure out what!


----------



## kjb

Dear Lively_child and Crohn'sinct

Thanks so much for your replies and thoughts - again much appreciated!

Lively_child - wow your situation sounds so similar to ours that my girl and I had a good chuckle!! She was also diagnosed with GERD but the meds did absolutely nothing so stopped them. We also feel that we were pigeon holed (with IBS) and it was VERY difficult to get the GI to think otherwise. Finally, he came around and admitted that there were way too many things that just didn't fit the IBS dx. It was only then that I felt we started to make any progress. My girl is also a tough cookie - walked around on a broken ankle for nearly a week (my fault as we were camping in a remote part of Australia and hospital was a long way away so I asked do you think it's broken or just sprained) and I suspect has a pretty high pain threshold. Throughout all of this she has never carried on with the pain, but I know it is there as her face changes colour and she goes quiet. She internalises rather than extrernalises if you know what I mean. I can't fault our GI from a testing point of view as I think she has had pretty much everything (except the MRE which may be what she actually needs the most!!). I am forever grateful that we have such a great healthcare system in this country. It is my first experience of having to be a part of it ther than an occasional trip to A&E for a broken bone.

Crohn'sinct - thanks for "adding your two cents worth" as we say here! I understand what you mean about the slow wheels of diagnosis. I see you have not one but two daughters who have been dx with Crohn's so I take my hat off to you. I also think you are right with your philosophy re knowing your child better than anyone else. I will keep fighting for her but it is difficult when I have no medical training and doctors have limited time. That is one of the key things I think that I have learnt from this experience.

Once again, thank you to you both for taking the time to help my little family (me and my girl!). I know that we will get there eventually, but it may take a little bit longer!

Cheers, K


----------



## kjb

Hi Everyone,

I'm back with another question, sorry.... 

My girl seems to be getting better! After nearly 6 months in this situation, a week ago today I went home from work and she wasn't that green/grey colour that tells me she is in significant pain. She said that she was feeling a bit better. Now, her pain has dropped from about a consistent 6 or 7 to a 1. She stopped taking the codeine on the weekend (as she was meant to) and then decided that as the Lyrica wasn't doing anything much (as she had forgotten to take it while still on the codeine) she decided to stop that too. She still needs the Questran otherwise she is going to be on the loo all day. What does this mean? I this the end of it? A cycle/flare or whatever we call it? What do we do now? Go back to the specialist? Cancel the ultrasound?

I'm thrilled (as it is all that I wanted for xmas!) but wondering what we should do too

Cheers
K


----------



## JosephClements

As to the normal test results, well they couldn't explain that but the one that really stumped them and they couldn't get a handle on was the CT scan. They could not believe that it was normal and within a week they opened her up and saw what they did. I guess the only explanation is they weren't able to fully visualise the terminal ileum. It wasn't until the day before she went into hospital the second time that a distant relation rang and told me she had Crohns and it took them 4 years to diagnose her. I started to google and things fell into place. At least when I saw the surgeon and paediatrician the next day I was armed with enough info to say to them - she is not leaving until you prove to me it isn't Crohns!


----------



## crohnsinct

Yikes!  Did she not have scopes?  She went straight to surgery?  Poor kid.  I hope she is dong better now.  

FWIW they don't typically do CT scans in kids due to the exposure.  They will usually opt for an MRE but in emergent cases the ER will sometimes order CT scans. But even the MRE's can sometimes miss things.  My daughter had disease hiding in the folds...some kids just have stealth Crohn's.


----------



## Imstillbigred87

Hi everyone I am desperate for some help and advice. my son Zachary is 3, around 10 months ago he started having pains in his legs and tummy .i put it down to attention after having a new baby and sought help from health visitor as he just wasn't thriving ...he stopped gaining weight , was very small and petite , could not walk far , very pale with dark
Circles under his eyes! I went back to doctors 6 months ago and told them I was worried as he was not a ahappu
Child and always tired and crying . Weeks later he stopped eating I took him to a and e and they felt an enlarged liver and did some
Bloods which showed anemia and started him on iron 

Week later I called doctor as Zachary was still in pain in legs and tummy and very tired ( has suffered constipation and diarrhea the whole time ) and she advised that he had high white blood count and high crp 

Referred to hospital on urgent basis after he lost half a stone on a few weeks ! 

Met with peadiatric doctor who said he did not want to redo bloods as he was anemic , Sent away and asked our Gp to do calprotectin test which has come back at 1480.consultant referred us on to Gi consultant who we seen last week and took bloods (no results yet ) and want to see him back in 8 weeks 

My son has sever leg and tummy pain still , although the iron has helped his energy levels and pale complexion I'm not sure what the docs are waiting about for ! 

Can anyone help if they have had similar situations ? 


Thanks so much 

Big red


----------



## Farmwife

Yes  now remember we're not docs but parents who want to help our kiddos.

But yes that's very similar to what my 3 year old had but all her test were normal, except for her scopes.
It's  not uncommon to have juvenile arthritis (JIA)  with a IBD. 
Grace (who's  9 now) has JIA, also.

Every kids  journey is different. 
Once you find out the true cause then you can move forward.

I'll tag some parents
crohnsinct 
mlp
Maya142
Pilgrim 

Please ask questions. We're here to help.


----------



## Imstillbigred87

Thanks so much for responding I'm feeling like I can't talk about it to my husband and family now as they are not as concerned as I am ! 

Can I ask how long it took for your daughters diagnosis? How long before endoscopy / biopsy etc ? 


Thanks so much sxx


----------



## Maya142

Unfortunately, that sounds like it could be IBD. The GI does not want to do more testing? To rule out infections at least?

There aren't that many things that make Fecal Calprotectin go up. It goes up if there is inflammation, either from an infection, from the use of NSAIDs (Ibuprofen) or from a disease like inflammatory bowel disease.

Fecal Calprotectin should be less than 50 in adults. It is higher in young kids, but your son's number 1480, would normally indicate a flare. Normally a GI would want to do scopes ASAP after seeing that. Especially in a child with anemia and stomach pain!! 

I'm kind of horrified that he is making your son wait 8 weeks. Is there any way you can get a second opinion?


----------



## Imstillbigred87

Thanks again 

The GI doctor said he wasn't really going with calprotectin test even though I did remind him of just how high this number was ! They said they would rather try not to do endoscopy and just wait and see how he is in couple of months. I'm not to sure what my rights are with second opinion but do you think I should maybe get in touch with the consultant and say I'm
Not happy about it? 

Thank you xx


----------



## Farmwife

Imstillbigred87 said:


> Thanks so much for responding I'm feeling like I can't talk about it to my husband and family now as they are not as concerned as I am !
> 
> Can I ask how long it took for your daughters diagnosis? How long before endoscopy / biopsy etc ?
> 
> 
> Thanks so much sxx


My daughter got the flu at 3 months old and was never the same. 
Her Gi symptoms showed then. 
However, because her smile was bright and her test were normal, no one listened. 
By three she had stopped eating and pain everywhere. Her first Gi did the scopes and the biopsies showed what was happening. 
Dec. 12 at the age of 3 she was dx. A year later she was dx with Jia. 
After dx she was placed on formula thru an NG tube (tube thru the nose ) This was so hard on us but it gave Grace all her nutrients. Its used to help  the gut by letting it rest because the formula is already broken down. 
Grace had other health issues, so her journey is different, like every buddy on this forum.


----------



## pdx

So sorry that your son is having such a rough time. My daughter was older (12) when she was diagnosed with IBD, but we had a similarly difficult time getting to a diagnosis. My daughter was having significant symptoms for about 6 months, but it was only at the point when she really started having a lot of pain, diarrhea, and losing weight that her pediatrician ordered a calprotectin test. The results came back really high, and I assumed that we'd see the GI right away, but the earliest available appointment was in 6 weeks.

We knew that there was no way that our daughter could make it 6 weeks, and within a few days, she was so weak and sick that we took her in to urgent care. The doctor there admitted her straight to the hospital, where we saw the GI, who ordered scopes and an MRE for later that week. The scopes confirmed IBD and her treatment started just a few days later. 

So that's a long way of saying that if your son keeps getting worse, you should consider taking him back to his pediatrician or to urgent care. Even if they can't make a diagnosis, they will recognize the signs of a child who is very dehydrated or malnourished or in severe pain, and that can often speed up the diagnosis process. 

I hope that you get a diagnosis soon, whatever it ends up being. It's very hard to wait while your child is suffering.


----------



## lively_child

Imstillbigred87
I agree with pdx on the going back to urgent care or GP.  If your son does have an IBD, it is such an invisible disease it is sometimes hard to get a diagnosis until the disease has become serious enough for Dr’s to look into.  
We were in same position as pdx, with a 3 month wait to see a GI when we decided my son was too ill to wait any longer.  We went to the emergency room and he was admitted for weight loss due to not eating, severe anemia and dehydration.  Because his case was determined to be more critical due to the hospital admission, we were able to talk with a GI doctor within 24 hours.  Even then, I had to push the doctors to do testing.  They were hesitant but I knew he was very ill.  
One thing I have learned is that you might need to be more insistent or a “squeakier wheel” to get through sometimes.  One time I even consistently called the GI twice a day to ask if they had a cancellation that he could get in sooner (politely) :ybiggrin:.  They eventually got tired of me calling and worked him in, lol.
…if your son does have an IBD…and others probably have better advice on this…but when my son is flaring, I don’t push him to eat solid food.  I keep him as hydrated as I can and offer broth and Pediasure for nutrients.
I wish the best of luck to you.

Mom of I (17) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec


----------



## Imstillbigred87

Thanks so much to everyone for sharing their experiences with me .

After noticing on a prescription from the GI doctor to GP they said diagnosis " constipation " I went into serious mummy mode ! I contacted my Gp who is going to back me up as I push for investigation ! The first paediatric doctor I seen has said he was referring my son to GI specifically for endoscopy because of the calprotectin level yet Gi says constipation ! Sorry for the rant just totally gobsmacked bout it all.


Over the last few days my son has become very tired again And is not eating as much and just keeps saying he's not feeling
Very well again! 

I wanted to ask if any of your children ever played whilst lying down ? 

His nursery had noted this  the last time he started getting sick ! Instead of playing and moving around he will lie on his back or side and play on the floor ! It's so strange to see it's like he just has no energy to move ! 

I've contacted the consultant and he has given me a telephone appointment for Thursday so I will let you know what the result or that is !timebeing tho Zachary is not very well at all and if this continues over the weekend I will take him to GP again on Monday to see if she can push it forward and if all fails it will be a and e for us this week , 


Loads of prayer of health for everyone , 


Thanks


----------



## Maya142

Wow. Your poor little guy!! He must really not be feeling well to lie down and play. That just breaks my heart.

Did they check recently if he's anemic? It sounds like he could be. I hope they are also checking iron studies - especially Ferritin. 

My daughter had a slightly low hemoglobin with a VERY low Ferritin (iron stores), which is called iron deficiency anemia. In that case, you need to take iron - either orally or by infusion. My daughter could not tolerate iron supplements - they made her horribly nauseous and miserable. Plus her Ferritin actually fell further while she was on them. 

She did really well with iron infusions - they worked like magic, especially for her fatigue (which was her major complaint).

Honestly, it sounds like your son needs scopes ASAP. I REALLY hope the GI consultant hurries things up. They can always admit to do urgent scopes (at least in the US).


----------



## Imstillbigred87

Thnks so much for your information ! Zachary is anemic and is already on iron supplements.i just received his blood results which stated that he is still iron deficient so will continue on the iron .   


He's getting sicker! Sweating bad and crying with pain in legs and tummy ! Doctors tomorrow but will take him to emergency care if he gets any worse ! He's so grumpy too.


Your advice and words are appreciated so much


----------



## lively_child

Imstillbigred87
I understand your frustration.  As I mentioned in a previous post, our first GI doctor diagnosed my son with GERD, and would not look any further. Constipation was also a problem for my son.

It did take a 2nd opinion from another Pediatric GI to get a diagnosis.

As to the playing while lying down, I'm no doctor, but that could be a symptom of an IBD or even celiac disease.  Before diagnosis and medication, my son was exhausted all the time. He slept a lot and didn't feel like doing much more than watching TV most days  He would try to get up and do the things he found fun, but I could tell it was all he could do to get the energy to get off the couch.  He was very anemic and not absorbing nutrients well.  

Hang in there and keep trying to get through to the doctors....

Mom of I (17) diagnosed with Crohns at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec


----------



## Lynda Lynda

Imstillbigred87 said:


> Thnks so much for your information ! Zachary is anemic and is already on iron supplements.i just received his blood results which stated that he is still iron deficient so will continue on the iron .
> 
> 
> He's getting sicker! Sweating bad and crying with pain in legs and tummy ! Doctors tomorrow but will take him to emergency care if he gets any worse ! He's so grumpy too.
> 
> 
> Your advice and words are appreciated so much


I don't even have a kid and this bothers me. 
It has been 6 days. How is your son doing?


----------



## Karijsix

This is my 1st post so I apologize if I am not posting in the correct way.  My 3 yo daughter had a 10 day lower gi bleed with diarrhea mid march and we saw a pediatirc gi specialist who stated since my daughter had a moderate amount of wbc's in her stool that IBD was a possibility, but it could also have just been some sort of viral infection (even though all her labs were normal aside from her ESR).

Fast forward to now and my daughter has had a week of stethorrhea and last night she started with a straw colored bm.  I am trying to get some labs ordered to check her liver function.  She was up crying between 2 and 3 am from pain.  

Since march, she has complained of several tummy aches and wakes up out of her sleep from pain occasionally.  Anyone have similar experiences?   

Waiting for the doctor to call and i am getting frustrated because I don't feel like the medical community takes her seriously because she is only 3 and in between episodes of being curled up in the fetal position with tears, she is still a bubbly 3 year old.


----------



## crohnsinct

Was the pediatric specialist a GI?  You really need a pediatric GI.  Preferably one at a major teaching hospital with a focus on IBD.  Most ped GI's will still take a 3 year old seriously.  There are enough kids with VEO IBD (Very early Onset) out there and plenty of studies and presentations at conferences etc that they should know it is a possibility.  

The virus or infection theory could be correct.  But since her issues continue, I would say it is probably time to investigate things further.  

Pale stool does not necessarily mean IBD but does point toward a bile salt problem so your desire for liver panel makes sense.  

I would also be looking for a fecal calprotectin test.  Elevated levels (keep in mind for a 3 year old their "normal" levels are usually a little higher than older kids) would point to ongoing inflammation and might get some attention.  Although, even an infection would have raised the fecal cal but maybe it has been enough time? 

Poor kiddo.  It is hard enough for an adult, even harder fora kid but these young ones really have it rough.  

You know your child best!  Keep advocating for her!  We are here for you if you have any questions or need a sounding board. 

P.S. You could go to the parents sub forum and start your own thread.  It might get more looks there and it makes it easier to track responses and keep track of everything that has been going on with her.


----------

