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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.
 
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 :)
 
@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
 
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
 
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.
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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.
 
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.
 
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
 
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!
 
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
 
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
 
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!!
 
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
 
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.
 
DustyKat said:
Okay, I have no idea about your school system and terminology so how old are you?
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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.
 
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:
 
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. :)
 
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.
 
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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.
 
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...
 
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
 
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!!
 
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
 
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 :)
 
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.
 
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??
 
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:
 
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 ??
 
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?
 
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
 
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?
 
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 ! :(
 
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.
 
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?
 
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!
 
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 !
 
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:
 
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.
 
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 :)
 
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' :eek: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:
 
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.
 
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.
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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 :)
 
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
 
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 :)
 
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
 
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.
 
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.
 
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
 
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*
 
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!
 
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*
 
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.
 
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
 
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.
 
Hope the CVS site helps to at least educate you about another possibility.
Click to expand...

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
 
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!
 
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
 
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 :)
 
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 *** (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
 
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!!
 
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 *** tend to have CHRPE (average 6 per eye), but not everyone with CHRPE will have ***. 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))
 
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 ***. And, from the very, very little I've read, it also seems that *** 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:
 
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:
 
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
 
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!
th_smiley_emoticons_doh.gif


Dusty. :)
 
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
 
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
 
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!
 
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 :)
 
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 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 :)
 
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
Click to expand...

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?
 
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 :)
Click to expand...

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?
 
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!
Click to expand...

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.
 
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
 
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!
 
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 =(
 
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
 
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
Click to expand...

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:
 
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...
 
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...
Click to expand...

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:
 
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
 
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:
 
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:
Click to expand...

Thanks googleing now
 
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
Click to expand...

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
 
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:
 
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.
 
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.
Click to expand...

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.
 
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. :/
 
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....:)
 

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