From Tucson, Arizona, USA:
My 25 month old son was diagnosed with islet cell hyperplasia at 18 months. Lows were in the 20s. He is currently taking 0.3 ml of diazoxide 3 times a day (started at 1ml 3 times daily). Is there a diet that would benefit him? Also, where might I locate others with this condition? So far, I have no support or info on this condition -- How long will he have it? He also has periods of extreme hyperactivity at both high and low ends. How can I mitigate this?
PHHI or persistent hyperinsulinemic hypoglycemia of infancy has always been difficult to manage; but since your son was not diagnosed in the early months of life I assume that he does not have a severe degree of hyperinsulinemia. Your concerns seem to be mainly about whether there might be any special dietary remedy and about the availability of a support group.
If we assume that the behaviour problems are related to blood sugar values, easy to understand with low levels; but not so easy with higher ones then I think the first thing to do is to meet with your son's pediatric endocrinologist to make sure that diazoxide alone is doing all that need be done to suppress insulin levels.and thus prevent hypoglycemia. If this is not the case you might want to discuss with him the addition of nifedipine, a calcium channel blocker, or of octreotide, a somatostatin analog, and even of surgery This latter might be important if you are not sure that this is hyperplasia as opposed to a small and easily removable insulinoma.
Beyond frequent feeding, diet doesn't have much to offer. I talked this over with one of our dietitians: you obviously want to avoid surges in blood sugar which stimulate insulin release, but replacing those calories with protein can directly stimulate insulin production and most starches (e.g, potatoes) are quickly converted to glucose. It is possible that the hyperactivity is not related to the hypoglycemia especially as high blood sugars also seem to trigger this behaviour and this would need to be evaluated as a separate issue.
PHHI is sufficiently rare that there is no website with a chat group that I could find. You might however visit the chat rooms at this website and see if you can find any contacts that way. The other suggestion which came from our Medical Social Worker was to contact the social work department at your nearest children's hospital and see if they can at least put you in touch with another family.
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