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From Birmingham, Alabama, USA:

My son, who is now 10 years old, was born with nesidioblastosis. At birth, he weighed 11 pounds and 9 ounces. At two weeks old, he was moved to a hospital here in Birmingham (he was born in Montgomery) and had a 95% pancreatectomy, which still did not 'cure' his hypoglycemia. He has been taking subcutaneous injections of Sandostatin since then until this year when they discovered that his hypoglycemia flipped and he now has type 1 diabetes. We were all afraid this was going to happen. He is coping well now, but it has been difficult, to say the least. There is, supposedly, only one pediatric endocrinologist in the Birmingham area and getting a call back or an appointment takes months.

What is the likelihood that my next child, whether male or female, will have nesidioblastosis (or PHHI, as they call it now)? I was always told that it is a gene deformity (chromosome 11d?) and that it comes from the mother. Is this true? I am no longer with my son's father. Should my new husband and I have our genes "examined?" If the case is that it is a strong likelihood, we would like to be aware of this fact beforehand, if at all possible


You need expert pediatric endocrinology care for the treatment of such severe hypoglycemia and now post-pancreatectomy diabetes. You may want to contact the research group headed by Dr. Charles Stanley, which may be of some assistance.


Original posting 29 Sep 2004
Posted to Nesidioblastosis


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