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Old 04-16-2008, 03:26 PM   #1
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Join Date: Feb 2008
Location: Westbrook, Maine
Posts: 45
gaudet2 HB User
Cannot find a!


I typically am on the fibromyalgia board, but since I have gotten so much help there, I thought I would try to help my sister out by coming here to see if someone could help us out.

My nephew is 12 years old, and for almost a year we have been taking him from doctor to doctor, specialist to specialist and STILL cannot get a diagnosis. Here is the rundown:

He has had medical issues since he was born and was hospitalized twice before he was six months old with what they called "RSV" at the time. He now has asthma and that is treated with an inhaler and a nebulizer treatment when needed. He has had stomach issues since birth, but they can't find anything wrong there, I am pretty sure he has already had two endoscopies. He always complains that his stomach hurts, but it is both stomach and intestinal as he does have problems with his bowels from time to time. Now, the most unusual of his symptoms is that he gets this burning and itching tongue with spots on it. When this occurs, he cannot eat or drink anything. The only thing he can tolerate is mints. He has been diagnosed with glossodynia, but out of all the medications he has been put on, none of them seem to work for any extended period of time. Right now, they have him on Lyrica (the same thing I am on for my Fibromyalgia). The doctor's are only treating his tongue and I don't think they are looking at the "whole picture" if you know what I mean.

The poor kid feels like no one believes that he is sick because the majority of his symptoms you can't see. I know how he feels because I went through months of "not knowing" what was wrong with me too. He cries himself to sleep every night and my sister is about to go off the deep end. I am trying my best to help her out.

Anyone, even if it doesn't seem like it would make sense, it may to us. Please help!


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