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From Pensacola, Florida, USA:

My six week old baby was delivered at 36 weeks of gestation and has congenital diabetes, along with severe head sparing intrauterine growth retardation. Neither side of our family has diabetes, and my glucose was within the normal range all through pregnancy. They have tried to get the diabetes controlled but are not having much luck. We understand this is a very rare disorder, that often it is transitional and will resolve by three to six months of age, but we would appreciate any information that you may have.

They are looking at using an insulin pump for him (He only weighs pounds 5 ounces), but they have not even been able to regulate him while on continuous feeds via a nasogastric tube and an intravenous drip of diluted regular insulin. Has anyone had patients with transitional neonatal diabetes and can you let me know how you attempted to get them regulated so they could gain weight? They attempted to fortify breast milk to 27 kcal with microlipids, but my son ended up with necrotizing enterocolitis, and, while NPO for 14 days, he still was not well regulated on a Regular insulin drip. At this time they are attempting 45 ml of breast milk every four hours and trying a protocol in which the insulin drip is turned on for two hours, turned off for two hours, then he is fed and the insulin drip is restarted for two hours, and so on.


Neonatal diabetes is, as you say, a very rare occurrence at around 1:500,000 births so that there are few accounts of clinical progress, although in most instances blood glucose control does not seem to have been a major issue. I have a few suggestions that you might like to discuss with the doctors, but I suspect that they will have already considered them:

  1. Repeated heel stick blood samples can be stressful (for both infant and technician) and can lead to immediate and transient blood sugar rises, so it might help to do blood sugars using a microsample method like the FreeStyle or One Touch® Ultra.
  2. My own feeling is that an insulin pump would be too cumbersome, but I would be inclined to give small doses of Humalog or Novolog insulin using an ultrafine needle with each feed. Ordinary Regular insulin might have too long an activity time, and again I wonder if the extra intravenous line is really needed.
  3. Possibly, continuous nasogastric feeding might be successfully combined with a single daily dose of Lantus (insulin glargine) insulin to give better control.
  4. Sensing that failure to gain weight is as much or more of a problem than blood glucose control, I wonder if your small son also has some measure of pancreatic agenesis as in the Wolcott-Rallison syndrome. This would lead to an impaired digestion of food and might be counteracted by using a soy hydolysate formula or by adding to the formula an enzyme preparation like Pancreazymin which is used in infants with cystic fibrosis.
  5. You might ask about looking for parental disomy on chromosome 6, not that it would help in present management, but it might give encouragement by indicating that this is the transient form of the disorder.


Original posting 29 Nov 2001
Posted to Daily Care


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