From Pine Bush, New York, USA:
My 13-year-old nephew has type 1 diabetes. He was born with nesidioblastosis. The doctors in the area don't seem to know the disease very well. We recently found he has a lesion on his brain and it took a neurologist 13 years later to tell us he had a stroke as a child. He has been feeling numbness in his hands and feet and they are going to test him to see if he is starting with seizures again, mini strokes or diabetic neuropathy.
The doctors seem to have a hard time controlling his sugars. At the age of three weeks, he had 95% of his pancreas removed. Is there a way to treat nesidioblastosis? Are there doctors in New York that specialize in this? We can't seem to find anyone.
You might try Dr. Robert Rappaport at Mt. Sinai. The world experts, including Dr. Charles Stanley, are at Children's Hospital of Philadelphia.
Original posting 7 Dec 2009
Posted to Nesidioblastosis
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