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Nesidioblastosis

My friends have a wee 21 month old boy who has been diagnosed with nesidioblastosis and is neutropenic. They have had a terrible time, he is on diazoxide and chlorothiazide, is covered from head to toe in hair, and is in hospital at least once a month as he catches every virus there is. They are talking to doctors about partial removal of the pancreas as he has recently started taking fits. Are they doing the right thing? What is the success rate of this operation?

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After having a full pancreatectomy, how badly will my digestive system be affected? Does the lack of a pancreas affect anything else? Is there any hope, in the future, of having any functionality of a pancreas restored? Does nesidioblastosis have any other symptoms that can affect you later in life?

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My friend’s son was diagnosed with nesidioblastosis when he was 12 days old. He had 97% of his pancreas removed and is now four years old. He is continuing to have seizures, and they are becoming more frequent. Could this be due to the low blood sugars he had when he was an infant? What is the life expectancy of children with nesidioblastosis?

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Is there any connection between nesidioblastosis and growth hormone deficiency or other bone disorders?

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My infant has nesidioblastosis. The doctor does not recommend a further pancreatectomy, believing the condition may go away over the years. What do you recommend?

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My 3 month old daughter was just diagnosed with nesidioblastosis. You seem to indicate that removing part of the pancreas almost always is the end result to solving PHHI.

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My 15 month old daughter, diagnosed with nesidioblastosis, is on octreotide and nifedipine. Do you know of another drug to treat PPHI? Do you know any foods or a way of eating to prevent hypoglycemia?

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I found out two years ago that I have nesidioblastosis, which causes me to feel tired and ill. I am overweight. How can I lose weight? Can you give me any advise on how to improve my condition?

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My nine year old daughter has nesidioblastosis and has been on diazoxide for 8 1/2 years. She also has chronic fatigue syndrome, dyslexia, and a really low confidence which is not helped by the side effects of diazoxide. Is there an alternative to diazoxide? Would it be better to have her pancreas removed?

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I just posted my daughter’s case on the message board “Alternatives to pancreatectomy Kristin’s miracle”. Do you know of anyone else using Sandostatin for its side effects of lowering insulin as an alternative to diazoxide or surgery?

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