Connecting the dots of an asymptomatic 5yr old

[KristinaM]

Hi Everyone! I will try my best to keep this short, but I am wondering if anyone has had similar symptoms or issues in their child. My child hasn't been dx yet, as we are waiting for a few more tests due to her lack of symptoms.

-Dx as functional constipation 2yrs ago (personally never thought that was really the dx). Takes ex lax daily. Major set backs every time we try to step down and increase fiber or get rid of it.

-August 2017- possibility of celiacs based on bloodworm

- Sept 2017 endoscopy shows EoE (start partial food elimination with wheat and dairy)

-Oct 2017 brought to ER with extreme stomach pain like appendicitis. Gets there and what the dr says is her bladder is protruding out of her stomach. Get her to pee and feels like a million bucks. But i'm wondering if this was just coincidence and this stomach pain is crohn's related?

-Dec 2017 endoscopy shows improvement in EoE and she is given back dairy due to improvement in wheat numbers (not celiacs though). Duodenal stomach ulcer found and biopsied.

- Stomach ulcer results: non-specific and need further investigation

- MRI- acute inflammation in jejunum (I can't find any "normal reasons to have inflammation here either)

- Feb 2018- colonoscopy/endoscopy/capsule camera.

- She already has eczema, peanut/tree nut and sesame allergies.

- No stomach pain, no fatigue, no diarrhea (just the possible constipation), nothing. She had no symptoms with her EoE dx either.

What do you all think?? Any of this sound familiar?? So frustrating! TIA!

 

[crohnsinct]

Has she had a fecal calprotectin test? How is she doing with growth and weight gain? How are her blood markers? CRP? Sed Rate etc.

There are plenty of kids here who are not text book. Hopefully the scopes in February give you solid answers. Good clean out is key to a good look. Good Luck!

 

[KristinaM]

Has she had a fecal calprotectin test? How is she doing with growth and weight gain? How are her blood markers? CRP? Sed Rate etc.

There are plenty of kids here who are not text book. Hopefully the scopes in February give you solid answers. Good clean out is key to a good look. Good Luck!

Thanks for responding!

Her stool test was the fecal calprotectin. I should have been more specific. But it was normal. She is tall and thin and growing. Good appetite. She’s built just like my husband. What’s CRP and see rate?

 

[Maya142]

CRP and Sed rate (ESR) are non-specific inflammatory markers. That means they are elevated when there is inflammation (for some kids) but could also be elevated for other reasons (for example, a cold). Generally Fecal Calprotectin is considered more accurate, but it is different for every kid.

Some kids have a perfectly normal ESR/CRP and still have IBD. Some kids even have normal fecal calprotectin tests and have IBD, though that is much rarer (but certainly possible).

My daughter was diagnosed after pretty non-specific symptoms - occasional constipation, abdominal pain and weight loss. No diarrhea or bleeding or any of the other big red flags for Crohn's. In fact, when we went in to have her scoped, we were SURE we were ruling out Crohn's but her colonoscopy showed ulcers in her colon and inflammation in her terminal ileum. Biopsies confirmed Crohn's. We were shocked.

I would wait and see - scopes and the pillcam will give you answers hopefully. It does sound like there is something going on, but it's hard to know since she already has GI conditions.

Is her EoE under control right now?