From Victoria, Australia:
We have a child diagnosed with a rare condition called nesidioblastosis. She has already had a partial removal of her pancreas but has not responded as well as she should have. She is 3 months old. She is now likely to have another operation to remove most or the rest of her pancreas. We are now faced with the hard question of whether we should instruct the surgeons to leave a little pancreas or go ahead and remove all the pancreas, which will make her diabetic and in need of enzyme replacement. Have you had any experience in this area and if so should we try to steer the surgeons toward a conservative partial removal of the rest of her pancreas?
Unhappily partial pancreatectomy does not always estimate exactly how much of the pancreas has to be removed to prevent hypoglycemia so the dilemma you have is not uncommon.
First of all, I assume that a medication called diazoxide was given a thorough trial before surgery and also that the histology of the pancreas that was removed confirmed the diagnosis of nesidioblastosis.
There seem to be only two choices left. The first is to remove the rest of the pancreas with the attendant problems of needing insulin and digestive enzyme supplements, a second partial pancreatectomy has been reported and talking to the surgeon might suggest this as still a possibility. However there is another approach which you might like to talk over with the surgeon and the paediatrician, which is the use of one of the drugs used to lower blood pressure. The paper which will almost certainly be in the nearest medical library, is by Lindley KJ entitled "Ionic Control of Beta Cell function in Nesidioblastosis, a possible therapeutic role for Calcium Channel Blockade" in the Archives of Disease in Childhood, Vol. 74, page 369, 1996.
As I remember this concerned only one case and I have not read of any further studies; but if further treatment is not urgent it might be worth an e-mail or even a telephone call to the Hospital for Sick Children in London to find out.
Additional Comments from Linda Mackowiak, diabetes nurse specialist:Another available medical approach is to use the drug octreotide (Sandostatin) from Sandoz Pharmaceuticals. This medication has to be given several times a day by injection.
Original posting 14 Jan 1999
Additional comment added 24 April 1999
Posted to Nesidioblastosis
Last Updated: Tuesday April 06, 2010 15:09:00
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