From Jacksonville, Florida, USA:
My 3 month old daughter was just diagnosed with nesidioblastosis. She is on the medication diazoxide and seems to be maintaining blood sugars very well, although it has only been 3 weeks. In the previous questions I have read on this web page, you seem to indicate that removing part of the pancreas almost always is the end result to solving PHHI. I am wondering if this solution was come to in these cases, after previous treatments failed. In short, even though the diazoxide seems to be working right now for my daughter, is it very likely that her body will begin to not respond to this drug or have a very low blood sugar incident and therefore, more aggressive measures will have to be taken? Do many children remain on diazoxide as a treatment or is this just a short term period of relief I am experiencing, and I should brace myself for this surgery in the future? I appreciate your statistical advice and know that each person is different. But it really helps to know the likelihood of what to expect.
You are right, this is a rare condition so each child is different. Some respond to diazoxide and eventually outgrow the need for medicine.
Watch the glucose and test frequently, especially after feeds as the insulin surge occurs then.
Original posting 23 Jun 1999
Posted to Nesidioblastosis
Last Updated: Tuesday April 06, 2010 15:09:03
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