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Has he been tested for Celiac Disease? It also wouldn't hurt to ask for copper and zinc levels. How are his biochemistry results? Glucose, protein, liver, kidney function?
Sorry, I don't have a lot of medical knowledge and I've never had a child but what you are describing for your son is how I used to be as a child and now at 55 they have finally figured out that I have a genetic defect of copper metabolism. I'm supposed to be the only person in Australia with this condition but I'm wondering if maybe it's just been under diagnosed.
Best of luck in your search.
Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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