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Nesidioblastosis

Born with nesidioblastosis, I was diagnosed with diabetes at age 17. Are my weight gain, acne, mood swings, and irregular menstrual cycles related to the removal of my pancreas?

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Do you know of any UK-based parent support groups or web support groups for nesidioblastosis?

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My son has nesidioblastosis, and while he’s already had a near-total pancreatectomy, he continues to have low blood sugars. The doctors are talking about discharging him on continued hydrocortisone and diazoxide medications. What are the long-term effects of steroid-use? Does this course of action sound reasonable?

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Born with nesidioblastosis, my friend had her pancreas removed at the age of three weeks. She has had recurrent stomach pain and the inability to consume fluids. What do you know about this type of problem?

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What are the indicators of persistent hyperinsulinemic hypoglycemia of Infancy (PHHI) in a fetus? At 23 weeks gestation, what are the danger signals one should be looking for in an ultrasound?

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Both my 24 year old son and 23 year old daughter were born with nesidioblastosis and had to have their pancreases removed when they were babies. What are the chances of my children’s children being born with the same problem?

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For eight weeks, I have been following a diet for hypoglycemia, but I’m still having very low blood sugars. One doctor suggested I have nesidioblastosis, probably as a result of my 2002 gastric bypass. Is this possible? Will an endocrinologist be able to help me?

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My step-daughter’s four month infant recently had seizures and blood sugars of 13-15 mg/dl [0.7-0.8 mmol/L), and she is currently in ICU with numerous tests being performed. Currently, the doctors are looking at hyperinsulinemia and nesidioblastosis. What are the chances that she will be brain damaged? What is the treatment and outcome of this illness? Where can we find out more, in layman’s terms?

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My son has nesidioblastosis and had the 95% pancreatectomy. I have several questions.

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My baby had a 95% pancreatectomy. Her eating is very, very slow. Is this normal? Is it because she doesn’t feel hungry at all?

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