My 11 Year Old has Eosinophilic in intestine, illeum, bowel. Never heard of this disorder before. 28 day's hospitalized. Lost 15 lbs.Help

[cooper26]

Ours started First weekend in October. We have been in and out of hospital 28 days. She's lost 15+ pounds, barely can eat, has horrible pain in stomach, can't walk, has lost strength and mobility. Doctors send us home and say she needs to go to a intensive chronic pain management program with intensive therapy. Finally saw a immunologist and no food allergies but he said with meds they prescribed they were only treating bowel not the stomach/intestine etc. This started out of the blue just vomiting and constipation then progressively got worse. Then after 3 rd admission to hospital they did upper/lower GI. Please give me guidance

Her pain is horrible and she can't stand straight or walk. Please give me advice.

[shellsteve74 FABED]

Sorry to hear what your daughter is going through. When they scoped did they find Eosinophilic infiltration? The drugs they usually start of with are Nalcrom then build up to stronger ones. Often they need to go on a elimination diet. Also an elemental diet can help. Have they gave her any thing for the pain?

[cooper26]

They didn't say infiltration but they took biopsies and found them in upper gut area and bowel. Gut area 64 in different biopsies and over a 100 in bowel area. They have her on singular, hydroxzine, budesonide by pill, cyproheptadine, senna, Lexapro, gabapentin,melatonin,omeprazole, Tramadol as needed and just recently saw a immunologist that started her on budesonide liquid twice a day. He's going over her labs and trying to help us. She has severe abdominal pain, can't walk or stand up straight. She had food allergy test and didn't test positive. We're starting an elimination diet. I just don't know what to do to get her proper treatment and bills are piling up.

[shellsteve74 FABED in reply to cooper26]

Are you in the USA ? If you are can we suggest you contact APFED.org they can give guidance on insurance etc

[Summertimelove]

My daughter had most of these symptoms by age 15-months-it was very scary. We did an elimination diet recommended through everything I had read online an amazing book I had been given Gut and Psychology Syndrome by: Dr. Natasha Campbell-McBride. By the time we got into a Gastrointestinal Specialist who diagnosed her with low gut IgM and IgG bacteria which caused allergic type reactions to dairy and gluten. Basically making it impossible to eat almost anything until her gut balanced out. Try talking to a gastrointestinal specialist concerning these issues with your daughter.

[KasiaUK]

Hello I’m wondering how is your daughter feeling now? I hope she is much better.