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Child with diarrhea/weight loss

Posted by bettsrn

My great niece has been in CHEO (in Ottawa) since Sept. She has be en on Neocate sinceshe was 5 weeks old due to a severe milk allergy. They admitted her for a scope and a trial of tube feeds. her colonscope showed signs of malnutrtion in her bowel as it leaves the stomach. Her lower bowel showed inflammatory signs. A trial of steroids did nothing. On the tube feeds she kept losing weight, finally they resorted to TPN. In less than 2 weeks she developed a major blood clot so that was stopped . She is back on tube feeds. The docs are mystified. She continues to have about 6-9 loose, watery stools per day, some explosive. Everything else has been negative. They find that her hair growth is abnormal and actually have some long name for it, but she doesn't have the other symptoms that go along with this. Sick Kids in Toronto wonder about an autoimmune disease but where do you start with that? Far too many- Ellie wouldn't have any blood left. They've already picked her dry- she had to have a unit of blood with her Hgb down to 66. Any ideas what we could try?  Thanks
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