From Nova Scotia, Canada:
Our now 5 year old son was diagnosed at the early age of six months with nesidioblastosis (hypoglycemia). He went from the early age of 2 months to 6 months undiagnosed. Doctors just couldn't find the reasons for his seizures. Meanwhile there had been brain damage (to the cerebellum) so his motor skills, speech, etc. have been affected. The specialists have been following his progress over the years. He is still on diazoxide (the medication stabilized him); the dosage has not been increased for several years. It looks like he may be slowly outgrowing it. (We have tried to wean him from it totally, but, it is obvious he still needs it.)
Are there many cases out there like our sons? Does this type of hypoglycemia lead to diabetes? He is doing well in school, but, with is balance and coordination problems he finds it socially difficult. He is a beautiful child with a great since of humor and we are so grateful that he is still with us. His first six months of life scared us all.
Nesidioblastosis is a rare condition in which the islet cells have a genetic defect in what is called the 'sulfonylurea receptor' on the surface of the cell. This results in an overproduction of insulin and severe hypoglycemia. The condition usually has to be treated surgically and since it is very difficult to assess exactly how much pancreas to remove, following the operation it is possible to have either a mild form of diabetes or some resurgence of the hyperinsulinism. You might like to talk to your son's doctor about a new medical treatment developed initially at the Hospital for Sick Children in London which uses a calcium channel blocker (drugs commonly used for treating high blood pressure in adults) with some success.
For additional information, see Lindley, KJ. et al. 'Ionic control of beta cell function in nesidioblastosis, a possible therapeutic role for calcium channel blockade'. Arch. Dis. Child. 74:369,1996.
Original posting 4 Apr 97
Last Updated: Tuesday April 06, 2010 15:08:54
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