Five months ago, I had a son born at 25 weeks. He spent 10 weeks in the Neonatal ICU with no problems. They sent him home on an apnea monitor. He is now five months old and went apneic on me four times in one day (thanks to the apnea monitor he is still alive). We rushed him to the ER and he was hospitalized for eight days and diagnosed with hyperinsulinemia/hypoglycemia. He is on diazoxide (Proglycem) twice daily and we check his blood level four times a day. We were told this was very rare for his age and all the doctors who saw him had never come across a case like his in all their years of practice. Is this caused by being so premature? How will I be able to detect a problem once he is off the monitor? Could he out grow it? Could it return later?

I think that it is likely that your son has a condition known as nesidioblastosis or Persistent Hyperinsulinemic Hypoglycemia of Infancy (PHHI). It is caused by a proliferation of insulin producing cells throughout the pancreas; but very occasionally they are aggregated to form a benign tumor. Insulin itself in utero is a growth hormone and not a controller of blood sugar and these babies are usually big: so that this problem did not cause the premature birth nor was it caused by that event. You can find some more information about this at a web site about Persistent Hyperinsulinemic Hypoglycemia of Infancy (http://www.sur1.com).

Diazoxide is the accepted initial treatment and if it does not work the next step would be to try the calcium channel blocker drug Nifedipine (long used in treating high blood pressure) together with raw cornstarch in the feeds: you might like to pass on the reference in J.Pediatric Endocrinology & Metabolism Vol 12, page 873, 1999 to your son’s doctor. Even cornstarch alone has been a help in achieving blood sugar level control. Some centers have found that another drug called Octreotide is successful; but this has to be given by injection. At some later stage, you will probably want to consider surgery. Removal of part of the pancreas may be very successful in doing away with the need for medication, although you would not want to consider it at this time. The disadvantages are that it may not remove enough of the pancreas and have to be repeated or that it may remove too much making the infant diabetic and perhaps in need of pancreatic digestive enzyme supplementation. This is not going to go away so that you will have to monitor blood sugars until everyone is confident that they are effectively controlled.

DOB