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Nesidioblastosis

Since my son and daughter were born with nesidioblastosis, had pancreatectomies, and now have to take insulin, will they develop the same problems as any other person with diabetes? What are the chances of their children having nesidioblastosis? My daughter is married and hopes to one day have a family.

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I am a 35 year old female who was diagnosed with nesidioblastosis and had 80% of my pancreas removed, but I am still having low blood sugar, and another doctor suggested trying a medication called octreotide or removal of the remaining pancreas. I have several questions.

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Since my gastric bypass surgery, I have been having low blood sugars. Why would this be happening?

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A family friend has a new baby diagnosed with persistent hyperinsulinemic hypoglycemia of infancy (nesidioblastosis). What is the incidence in Caucasians?

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My 21 day old granddaughter has been suffering with hypoglycemia since birth. How can we confirm this? Is this curable?

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My daughter had a partial pancreatectomy for nesidioblastosis, then petit mal seizures for many years. She was treated with diazoxide, but “recovered” after a grand mal seizure at the age of 12. What’s her prognosis? Could my son’s children develop nesidioblastosis?

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I am 22 years old, I was born with nesidioblastosis, I had to have half of my pancreas removed when I was a baby, and I developed diabetes at the age of 14. My 23 year old brother who also had nesidioblastosis, had 90% of his pancreas removed at birth, and he developed diabetes right away. What are the chances that my children or my brother’s children will be born with nesidioblastosis?

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My daughter had a total pancreatectomy as an infant and is insulin dependent. When do we start testing for complications? Which is more important in determining the likelihood of complications, the A1c or daily glucose readings?

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My daughter has PHHI. Since she is gaining too much weight, can I give her cornflour with water at night instead of cornflour with milk? Will it still control her blood sugars?

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My seven year old daughter was born with hypoglycemia due to too much insulin production and secretion and she successfully outgrew her need for medication. She has sparse, slow growing hair, which is also falling out. What do the statistics show is the probability for her to either have a relapse of low sugar, high sugar, or remain stable? Is there any known relationship between diazoxide and on-going loss of hair after weaned?

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