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November 7, 2000

Nesidioblastosis, Transplants

Question from America On-Line:

Eleven years ago, my son was born with nesidioblastosis. At the age of two months, months he had surgery to remove 95% of his pancreas. At the time, very little information was known about it. The doctor had only heard of one other case. He had several small doses of insulin directly after surgery to stabilize his blood sugars. For the next several years, he had recurring hypoglycemia and eventually outgrew it. Three years ago, he was diagnosed with diabetes. We have always had trouble controlling his blood sugars. He constantly runs high. This summer he was put on the insulin pump. He responded perfectly for the first several months, then his high blood sugars returned. Recently, our doctor told us that she had been told during a conference she went to that he is a perfect candidate for a [pancreas*] transplant. He has been diagnosed with ADHD, but other than that and his diabetes, he has no other health problems. The doctor said this was the reason he was a good candidate for the transplant. She told me to look up the information on the web and get him on a waiting list. I cannot find any information on transplants other than those that have had or need a kidney transplant. I'm assuming that transplants for children with no other health problems is a new situation. Do you have any information on this or can you tell me who to contact concerning this issue?


As far as I know, there is no center in North America that would normally accept an eleven year old child for pancreas transplantation. The main reason for this is that with a limited supply of donors preference is given to people with type 1A (autoimmune) diabetes who have significant renal damage, and who now also require a kidney transplant. Besides, this the long term effects of immunomodulation in children are not yet worked out. However, this may not always be the case for a number of reasons. First, two of the main pump manufacturers, Disetronic Medical Systems and MiniMed, Inc. have developed efficient glucose sensors, and both are working to safely combine sensor and pump to make an artificial external pancreas, but success looks like being five years away, at the very least. Also, if you have access to a hospital library, your doctor may even have it, there is a report by Shapiro and others in the July 27th issue this year of the New England Journal of Medicine on seven, now twelve, successful cases of islet cell transplantation. This technique, whilst diminishing operative risk, does not get around the issue of donor scarcity, or the problem of long term use of immunosuppressive medication in children. Finally, there is a group in New Zealand who are trying to get permission to start trials in humans, using encapsulated pig islets. This would be an outpatient procedure and would not involve immunosuppressive drugs.

In the meantime, since your son did have a period on the insulin pump when his glucose control was good, I would suspect the present erratic levels are most likely to be due to the various stresses of ADHD, combined with those of impending adolescence. For this reason, I would seek to explore this with the help of the medical social worker or clinical psychologist on his care team, and I would also, if you have not already done it, try to develop a comprehensive profile of blood sugars to make maximal use of the various basal and bolus settings on his pump.


[Editor’s comment: * It was not stated in the original question whether the writer was discussing whole-pancreas or islet cell transplants.