11 year old son recently diagnosed :(

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Date Joined Aug 2017
Total Posts : 1
   Posted 8/26/2017 8:43 AM (GMT -7)   
After a 2 year journey of hospital stays and symptoms, my 11 year old son is about to be officially diagnosed next week with an MRI to peek at his entire tract and mainly the small intestine. He recently had a 3 night hospital stay after I took him to the ER for severe diarrhea, dehydration and stomach pain. It took 2 days to get him re-hydrated and back to baseline and they did an upper and lower endoscopy with biopsies taken throughout. 2 stomach ulcers were seen and the biopsies came back with eosinophils throughout his entire GI tract and his fecal calprotein levels are very high (I'm not sure the exact number). I'm sure there are more details that I'm leaving out that are important, but alas I'm not an MD.

His gastroenterologist sent us to an allergist this week to make sure that food allergies were not contributing to his issues and he was tested for every allergen known to man - nothing reactive. He also had a celiac panel done, negative.

In the last 60 days he has lost about 20lbs and just looking at him I can tell he's a sick guy. He's not currently complaining too much of pain or other symptoms really but then again I believe he's trying to downplay what is going on and his symptoms because he hates the hospital. He did not do too well after having General anesthesia for his endoscopies. He also is barely eating - I'm trying the best I can and he is drinking some ensure drinks daily but the doctor seems hopeful that his medicine that he's just started on will help improve his appetite. Here's what he is taking:

Prilosec (for the ulcers)
Apriso 0.375gm - 3 capsules every morning
Budesonide 3mg - 3 capsules/day for a week, 2 capsules/day for a week and then 1 a day.

He also takes concerta daily (which he has since he was 8) for ADHD

I'd definitely appreciate any advice as this is an overwhelming new journey for us and I'm worried about my guy.

Thanks for listening!

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Date Joined Mar 2007
Total Posts : 1653
   Posted 8/26/2017 2:00 PM (GMT -7)   
I'm really sorry to hear your son is struggling - I can only imagine how tough it is on an 11 year old and his family!

I have a couple of comments:

1. Apriso is a medication for ulcerative colitis, not Crohn's. The fact that he was prescribed Apriso makes me question the doctor's experience with Crohn's.


2. Eosinophils found in biopsies throughout the digestive tract are not a typical finding in Crohn's disease. Were they found in the biopsies from his colon? Any other findings in the biopsies from his colon? Any gross/macroscopic finding from his colonoscopy, such as visible inflammation and/or ulceration? Or were the eosinophils primarily found in his stomach and duodenum?

3. So many eosinophils does warrant allergy testing. Unfortunately allergy testing isn't totally reliable. Did they do skin prick testing or blood tests or both? Did they do a large panel of foods? Have you tried any elimination diets?

4. Surely they've done basic blood tests. Were his eosinophil counts high? If so, how high?

I don't have nearly enough info to warrant a guess, but I will anyway. To me, this sounds a bit like eosinophilic gastroenteritis.

Post Edited (beave) : 8/26/2017 3:29:17 PM (GMT-6)

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Date Joined Mar 2007
Total Posts : 1653
   Posted 8/26/2017 2:01 PM (GMT -7)   

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Date Joined Mar 2007
Total Posts : 1803
   Posted 8/26/2017 3:03 PM (GMT -7)   
I too am surprised at the choice of meds. Also, did they do upper and lower scopes with biopies? This is the only way to confirm Crohn's. Did he show elevated Crohn's markers in his bloodwork? CRP, Sed. rate? Iron stores?
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