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Date of last update: 9/9/2017.

Forum Name: Pediatric Topics

Question: Eosinophilic disorder- non responsive to Neocate and steroid

 katiesmom - Wed Mar 16, 2005 10:27 pm

My 8 mo old daughter has had 2 endoscopies (w/ biopsies) which both showed elevated eosinophils in the stomach (lamina propria)... the first biopsy was in November, the second in February- both showed the same number of eosinophils. She has been on Neocate only since January and while she finally gained weight on Neocate that was the only difference. She still is very unsettled, very bothered, sucking her fingers all the time, spitting up alot, overall she is not well and it has taken a serious toll on everyone in this house.

My problem is our pedi GI insists it's allergy, yet it makes no sense to me why she didn't respond (symptomatically) to Neocate. So, we tried several things at his request: sugar water (he thought she just had learned behavior of being in pain), Singulair (for its mast stabilizing effects) and now we just finished steroids. She is no better. I bet if he scoped her today she would still have eosinophils.

What is going on? I am so worn out from trying to convince doctors something is wrong. It has been 8 months and still we have no diagnosis and no idea what's going on with her. Will she outgrow this? What else could cause persistent eosinophillia? He keeps saying her case is mild (she has somewhere around 19-20 eos per hpf) and makes me think we should just wait it out. But what does that mean? She is miserable. She is bothered. We don't know what to do anymore. We have just carried her through the house as she's cried. Whatever is wrong with her seems to flare up and flare back down. She has MANY bad days but is able to have some good days and good times. Overall, though, she has been uncomfortable for most of her life.

I just don't know what to do anymore. I don't know what else could be going on. I feel like they're missing something but I don't know what. What else should be done? We are at our wit's end and are desperate for help. Please, can someone help us? Our pedi GI said the next step will be Amitryptylline (for its central analgesic effect- incidentally, my husband and I are both pharmacists and think he's just full of it- we feel like he's just trying to buy some time and keep us at a distance by medicating her with random meds that won't work)

Please help.
 Dr. Heba Ismail - Sun Mar 20, 2005 1:04 pm

Dear mom to Katherine,
I understand your concern, only, I need to know more.
How did the whole story start? What other labs were done?
Was a skin testing for food allergy done? How about a CBC and stool analysis?
Any family history of allergies? Does certain food make her worse?
We need to be exclude the possibilty of any misdiagnosis.
 katiesmom - Sun Mar 20, 2005 6:30 pm

It started with extreme irritability as a newborn but was not colic (my first daughter had colic so we know all about that unfortunately)... it was entirely centered around digestion... she refused to nurse, many times screamed at the sight of the breast, went 6, 8 sometimes 10 hours without nursing. Our pedi said it was colic, we suspected reflux, namely silent/hidden reflux as her symptoms seemed to fit it the best. We referred ourselves to a pedi GI who said she was a classic case for silent reflux, yet she did not respond to MANY meds and at high doses. That's when I started wondering if the reflux were secondary to another problem. After much research I happened upon eosinophilic disorders and was convinced that's what it was. I tried elimination diets but didn't find they greatly helped, nothing consistent anyways. Finally I asked for her to be 'scoped' and they did so in November BUT informed us she had no signs of eosinophils, no sign of allergy and no reason for me to quit nursing. I asked all the right questions, I was sure they were mistaken but finally I accepted it and continued to nurse for 2 more months. What I didn't know was that the doctor who read the results made an error and missed the fact that she had 'prominent lamina propria eosinophils'... why we were misinformed, how the error happened I will never know but in those two months Katherine stopped gaining weight, had diarrhea 5 or more times a day and cried for most of those days. Finally we learned of the error (beginning of Jan.) and stopped nursing and started Neocate. She gained weight immediately but was still bothered. We had another endoscopy/biopsy last month which showed the same number of eosinophils as she had in November which is odd because generally the eos die within a week or so of the suspected allergen being removed. We just finished up a 3 week course of steroids but she is still bothered. At this point his new theory is that if she is still bothered after steroids then eosinophils aren't her problem (because theoretically they should've been wiped out by the steroids) but why does she still have them? He doesn't know. He said maybe her problem started out as allergy but developed into some form of IBS??

Anyways, for tests.... she had a CBC and all was normal except she was borderline anemic. Also, she had an absolute eosinophil count which was normal. She had a stool test to test for fat percentage which was normal. She has also had a urine culture to rule out UTI. She had another stool test to rule out viral infection (early on).

I would appreciate any advice or input you can give.
 Dr. Heba Ismail - Tue Mar 22, 2005 12:30 pm

Dear katiesmom,
Regretfully, there are no evidence-based studies of the treatment of patients with eosinophilic gastroenteritis. Treatment decisions depend on experience gained from observations linking causative entities, principal clinical manifestations, and anticipated natural history of the disease.
Elimination of foods and the use of elemental diets, corticosteroids, and mast cell inhibitors (eg, cromolyn sodium, ketotifen), alone or in combination, all have their place, depending on the age of the patient, organ involved, clinical presentation, and clinical urgency.
Patients with eosinophilic gastroenteritis generally respond well to corticosteroids but relapses are common. Patients with relapsing disease are usually placed on long-term low-dose prednisone or immunosuppressive therapy. Reports of favorable responses to new leukotriene inhibitors in patients with eosinophilic gastroenteritis are encouraging.
Occult parasitism remains an elusive and unrecognized cause of an unknown number of cases, suggesting that empiric antihelminthic therapy should be tried in some patients.
I agree with your doctor that with the eosinophil count she has, her condition is mild, but it is puzzling that she is not responding so well to treatment.
I suggest you consider and discuss with your doctor the possibilty of prolonging the steroid therapy, as well as considering an antihelminthic therapy. Even though her age is not quite prone to parasitic infestations, you may as well give the therapy to eliminate that possibility altogether.

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