From Edinburgh, Scotland:
My 13 week old baby boy has been diagnosed with nesidioblastosis. He has had a small amount of his pancreas removed for biopsy, the pathology of which showed the over-secretion of insulin to be a diffuse problem. He has not yet left hospital and is currently being treated with Octreotide (continuous administering via a Hickman central line). He previously reacted badly to Diazoxide and cannot be put back onto that drug. The hospital is reluctant to perform a further pancreatectomy as our endocrinology expert believes that there is now evidence to suggest that the condition may "burn itself out" albeit over a period years rather than months. Is this the best course of action?
This is such a rare condition and the treatment of each individual case so very difficult. The condition does seem to get better over time and children do not need medicines; however, it is some time, usually years. Surgery is forever and might provoke diabetes and digestive problems, forever. It is a very difficult decision and one best left to those close at hand.
Original posting 5 Nov 2005
Posted to Nesidioblastosis
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