Undiagnosed Kids

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 !

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!

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

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!

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:

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!

Ditto Dex !

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

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.

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!

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!

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

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.

What a great idea billyjoel!

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

All in favor ??

Ay!:kiss:

Somebody just got volunTOLD!!!! Hahaha!

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!!

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.

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:

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

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!

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from Dusty LOL :ylol2:

Dusty...I'm shaking !

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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

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:

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

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!

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

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!

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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:

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 ?

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.

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)

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

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 ?

Click to expand...

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.

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

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

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

Much love, :Karl:
Dusty. xxxxxxxx

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:

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:

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

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

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 !

Me kidding? Using puns? Never! :wink:

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

Dusty.

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!!

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!

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:

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.

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:

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

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~

@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

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??

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.

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!

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:

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

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...

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

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

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!

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!

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!!

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!

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!!

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!

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

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

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

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

Click to expand...

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

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.

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.

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:

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

@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!!

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:

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!!

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

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..

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

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

Much love, :wub:
Dusty. xxxxxxxx

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

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!

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

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~

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 !

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

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 !

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!!

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

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

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!

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

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 ?

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

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 !!

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)))))))))

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.

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.

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.

Click to expand...

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!

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

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

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!

Good stuff, T. :ghug:

J.

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:

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