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mystery girl
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mystery girl

I have a two and half year old girl. She started to have blood and mucus in stools at 6 weeks old. Still does. Colonoscopy revealed no source, but large kinks in bowel prevented getting up far enough. Exclusively breast-fed til one year, then allergic reactions to milk, alimentum, nutramigen. Positive skin tests to dairy, egg, negative skin tests to peanut, tree nut, soy, beef, sesame, but she gets hives, swelling, etc, when nuts, peanuts, put against cheek. Possible celiac, but off gluten for now, as second year of life she dropped from 85th to 5th percentile, chronic diarrhea, reactions to fruits, vegetables as well all that time. Sick alot also, then blood tests revealed IGA levels absent. Diet brought down to chicken, rice, potatoes, rice milk and neocate. Growth now caught up, but introduction of any new foods causes rashes, diarrhea, hives, burns and blisters and yeast in diaper area. Scalp is very bad with dermatitis/yeast since intro of foods at 1 year. (Would not even try foods until almost 1 year, aversion, maybe natural defense) IGA deficiency is certain, but what else could be going on and what could be causing the blood and mucus? Allergy specialist thinks that blood/mucus are not allergy, or IGE mediated response in system. Gastro specialist not sure. I am at my wits end. Doctors think another colonoscopy is needed soon, even though it is risky, as bowel was almost perforated last time, and daughter had to have three doses of ketamine, as she kept waking up. Please, any thoughts. Anyone else out there like this?
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Wow, I'm sorry you and your little one are going through so much.  I'd say keep searching for answers and going to different drs.  When my pediatrician would not prescribe meds for my dd's reflux, I saw 5 different specialists until one finally agreed and that's exactly what she needed.  I hope you'll find answers you're searching for soon.   Good luck.
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Avatar_f_tn
I asked around and someone suggested this forum www.parent-2-parent.com/forum
They said that a lot of parents are on there with kids with similar issues.  I hope someone can answer you questions better on that forum.
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Avatar_f_tn
I hope you'll come back to read all these replies (even though they're all by me).  I took the liberty of posting your question on another forum (I Hope you don't mind) and these are the replies I got.  Hope they help:

She is pretty young still, so allergy testing is really not that reliable.
I would ask her what tests the GI has done -- i assume she has had endoscopies with biopsies several times? When there are issues with allergies in the GI tract, they often do not show up until kids are about her age. So i would def ask for another biopsy of her esophagus, stomach, and intestines, if she has not had a recent one (a girl with a feeding tube fromm different problem only tested positive for allergies closer to 3, even when they suspected she was having GI allergies before).
On the allergies to peanuts -- well, the funny thing about allergies is that unless you have had the food, there is no certainty that that test will work. So for example, we are keeping Matthew off all nuts and shellfish until he is prob 4 -- the allergist told us there was no point testing him for them since he has never had them in his system and therefore his immune system has neverr really reacted to them... so i would assume she has some type of allergy and leave it at that.
Metabolic workups, including some type of mito issue? A lot of mito kids have immune system issues.
I have no idea what forum you are a member of but i would recommend to her to join www.parent-2-parent.com/forum
it is a wonderful forum and hte kids there have similar issues. everything i have mentioned above is just from postings from several parents, but seems like she would really benefit from it


if they suspect celiac, she needs and endoscopy with biopsies---not a colonoscopy.  she also needs to be on gluten for the tests to be accurate---whether endoscope or blood test.  IgA deficiency happens more often in the cleiac population than in the regular population.    one of my kids is IgA deficient, but the disease has not activated in him.  also, if there is an IgA deficiency, specialized testing needs to be done to detect celiac, but the tests are not accurate before about 3 years old.
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