From Halifax, Nova Scotia, Canada:
We have an eight year old son that we adopted at 8 weeks of age. When he came to us, he had had 90% of his pancreas removed because of nesidioblastosis. He is followed routinely by a pediatric endocrinologist. He is of normal height and weight and is active, playing hockey and soccer and does reasonably well at school. As far as can be determined, he is a normal child in every way.
Our pediatrician tells us that he is at risk for diabetes (not surprising to us, given his history) but is unable to tell us of any long term studies of people who had pancreatectomy in the newborn period because of nesidioblastosis. Do you know of any studies that show the incidence of diabetes in these patients in adolescence or adulthood? We are prepared for that possibility but would like to know whether we should look at it as very likely or more of a remote possibility. We would be grateful for any information you have.
I think you have been extraordinarily lucky so far in that your son seems to have had essentially no complications as a consequence of his nesidioblastosis. The reports on long term follow up are very limited and because this is such a rare condition they don't start with a uniform group. Your son's pediatrician is right however and there does seem to be some increased risk of diabetes in the future. The only report that I can find that you might wish to share with him is by T.Izumi in Acta Paediatrica Japonica Volume 39, Pages 7-10, 1997. Your nearest medical library ought to be able to get you a copy if they do not have the journal itself. What this paper implied was that even if there was no overt glucose intolerance there was often some laboratory evidence of insulin insufficiency which could ultimately lead to diabetes. This kind of diabetes, which is not unlike that in Cystic Fibrosis, would not be autoimmune and might be expected to be fairly easy to treat not least because of the likelihood of some residual functioning islet tissue. I don't think that without further laboratory testing it is possible to be more precise and I'm sorry that I could not interpret the C-peptide data; you would need to get normal values from the laboratory that performed the test.
Original posting 8 May 1999
Posted to Nesidioblastosis
Last Updated: Tuesday April 06, 2010 15:09:04
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