My 10 year old son, who was diagnosed with diabetes when he was 10 weeks old, was on one shot of only 4 units of NPH for nine years, but in the past few months, I am having a hard time controlling his blood sugars. He is now taking two to three shots a day, and his blood sugars range 46-480 mg/dl [2.6-26.7 mmol/L]! What has happened? How can he take one shot of 4 units a day for nine years and now his morning dose has more than tripled.

I have not read anywhere about a honeymoon stage lasting this long, and his endocrinologist always tell me he is a special case. Is there anything I could have done to prevented this? I now fully understand raising a child with diabetes is hard. Before it was a breeze, I just gave him a shot in the morning, checked his blood sugars a few times a day, and I didn’t let him eat anything with sugar in it. Before he never had lows or real highs, except when he was diagnosed. From then on, it was easy until now! Any medical explanation?

No doubt your son’s diabetes is very unusual in its presentation and course. A 10 week old with diabetes usually does not have typical type 1 diabetes. I would consider such things a pancreatic hypoplasia (a small pancreas).

There is another, very uncommon form of diabetes in infancy, that I think presents actually a bit earlier than 10 weeks. In this genetic condition, there is an abnormality in one of the genes on one of the #6 chromosomes. There is still another form of neonatal diabetes that is due to abnormal function of a cellular enzyme (which is coded on the #7 chromosomes. There are transient and permanent forms of neonatal diabetes mellitus. In the transient forms, there seems to be a predisposition later in life to develop type 2 diabetes. I am uncertain about progression to type 1.

So why is your son suddenly so much more insulin dependent? I think because he likely has no more insulin reserve or beta cells function left. Please don’t blame yourself as there was likely nothing you did that caused or exacerbated this. Be thankful that you’ve gone 10 years with easy control. I hope his hemoglobin A1c values have been good, and he’s not demonstrated evidence of complications. Commonly, most folks with insulin dependency require a total amount of about 1 unit of insulin for every kilogram of body weight.

You might talk with your son’s diabetes team about the utility of now measuring his pancreatic antibodies or performing the special genetic tests for the chromosome 6 (and maybe 7) irregularities. Samples from both parents may also be required to do that testing. It might be interesting to do an MRI of his pancreas. Would it add anything? Maybe not, but if the pancreas appeared smaller than usual, that might help with some of your unanswered questions.

DS