pls help my child is having PHHI (Persistent Hyperinsulinemic Hypoglycemia of Infancy)

[vipinsingla]

My child is having PHHI , born on 14th july 07, with weight 3.75 kg.we are unable to control sugar level it dips to sometimes 10mg/dl. currently we are providing him , diazoxide and octriode.
really don't know what to do , because hypoglycemia may lead to brain damage also. if surgary is required where to get the same done and who is the best surgen.
specific questions :
-since he is 40 days old , and we are still unable to control the sugar what to do.
-is there any treatment available in India.
-if not where to go?
-we are trying with diazoxide, octreotide (sandostatin).
pls help us in providing guidance pls pls pls

[JDRF-VOL-SG]

I am so sorry that your little one is having this problem. I am not aware of any treatments that stop this from happening, although I have read of other children who have persistent hyperinsulin production. All parents who have written to us about this kind of thing sound as desperate as you are, and I wish I knew of some easy solution. Those of us who monitor this site are not doctors, so only know what we read about and what we have experienced with type 1 diabetes. The best thing that I am aware of that the doctors can continue to do is to check him or her often and continue to try to work to normalize the situation. I do know that this is not a situation that is corrected by surgery unless a tumor of some sort is causing the pancreas to overproduce. I have read about babies who have trouble keeping glucose levels up the first few days, and usually they grow out of it. I hope your child gets better in time.

If anyone else on this forum can offer more information to reassure this parent, please speak up.