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Nesidioblastosis

My daughter has been diagnosed with non-ketotic hyperinsulinemic hypoglycemia, and is on diazoxide three times per day to maintain normal sugars. I would like to obtain information on nesidioblastosis.

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Where can we find an expert in nesidioblastosis in the New York area? Is there a way to treat it?

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My son was born with nesidioblastosis and had surgery to remove 95% of his pancreas. Three years ago, he was diagnosed with diabetes. We have always had trouble controlling his blood sugars. This summer he was put on the insulin pump. The first several months he responded perfectly then his high blood sugars returned. Our doctor told us he is a perfect candidate for a transplant. Do you have any information?

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I have just moved in with my 18 year old best friend who had nesidioblastosis as a baby, consequently had 95% of her pancreas removed, and now she is insulin dependent. I really want to help her without fussing, but I don’t know how. Could you explain a little more about this condition please?

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Diagnosed with PHHI as an infant, my now 11-year-old son is having fluctuating blood sugars. What should I do about this?

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My son at 30 hours of life started having seizures, with a glucose level of 20. He has hypoglycemia and hyperinsulinemia. His lowest blood sugar was 19. He was started on diazoxide, and was on it for 16 days. What is the chance of his glucose dropping again?

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When I want to sleep at my friend’s house, my mom wants to speak with my friend’s mom, as if she doesn’t trust me and blames it on my diabetes. How do I handle this?

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I want to know if there is possible the diagnosis of nesidioblastosis in adult female with hypoglycemia. Growth hormone, cortisol and insulin blood levels are normal. The determination of C-peptide is in process.

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What is the percentage of people in the world who have nesidioblastosis?

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My son has been successfully using oral diazoxide. Since it seems he will always be on this medicine, I am wondering what the long- term effects are of using diazoxide are. Could it be damaging in anyway, physically or mentally?

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