My daughter had a total pancreatectomy at nine weeks of age due to Persistent Hyperinsulinemic Hypoglycemia of Infancy (PHHI) and is insulin dependent. Now, three and a half years old, she is on Lantus and Humalog. She gets A1c tests every three months. Her highest was 8.2 at about nine months old. Her latest was 7.2. Her endocrinologist says this is acceptable and doesn’t want her control “too tight” due to her age and the potential for hypoglycemic episodes.

At what point should she start being tested for complications?

Is the A1c number the most important factor in determining the likelihood for complications or, is it the day to day glucose readings?

How dangerous is it to have an occasional high that lasts for a few hours?

Since she is insulin dependent due to a total pancreatectomy, is she more or less likely to have complications than a type 1 diabetic?

Will her control be any easier during puberty, etc. than a person with type 1?

Both the day to day blood glucose values and the A1c values matter. The A1c is the most objective and we have excellent research studies showing the correlations with future complications. Both would likely indicate similar levels of control or lack of control since they are closely associated. Most complications of diabetes do not show up until at or around puberty, so screening generally starts at these times. However, the high sugars previously thought to “not matter so much” prepuberty have been shown in studies in Berlin, Sydney, Brussels and Chieti, to matter even before puberty. So, many of us believe that optimum control should start at diagnosis and that there is no “safe age” to allow higher blood glucose levels. Always, this is modified by degree, frequency and severity of hypoglycemia.

It does not matter that she has autoimmune type 1 diabetes or that her diabetes is caused by having severe hyperinsulinemia necessitating surgical pancreas removal as an infant. What matters is glycemic control, as well as other familial/genetic predispositions towards vascular problems: hypertension, lipid problems, heart attack history, stroke history, etc. It would be good for you to go back to your endocrinologist and discuss your notions of improving glucose control with theirs and see if you can figure out some way to improve the A1c levels without producing more hypoglycemia, such as overlapping doses of Lantus twice a day instead of just once a day, smaller bolus doses of analogs pre-meals/pre-snacks, Lantus at bedtime and NPH at lunch as an alternative, insulin pumps, etc.

SB