I have type 1 diabetes. I occasionally test my 16 month old son’s blood sugars out of curiosity, and he has had some levels on my meter that make me uneasy, while others seem to be fine. He’s been as high as 158 mg/dl [8.8 mmol/L]. His fasting levels are always fairly normal, but usually his numbers any other time are in the 130s [mg/dl, 7.2 mmol/L] or higher.

I’ve asked his pediatrician about all this, and she just tells me “not to worry, if he had diabetes, we’d know”, and I requested he have antibody testing (ICA and anti-GAD) done at around age 11 months to see if he had the autoimmune markers, but the sample that had to be sent out to a lab out of town was “lost” before it was sent, and I didn’t want to struggle with getting another blood draw done, so I just dropped the issue.

He continues to have readings higher than I am comfortable with, and he’s been leaking out of diapers lately without much increase in his fluid intake. He doesn’t seem to be losing weight, but I can’t stop worrying that he is going to develop diabetes.

I know meters aren’t good for diagnosing, but mine has always been very close to my own lab readings, so I feel it’s fairly accurate. What can I do to reassure myself that he’s really okay?

I certainly understand your worries, and I don’t think I can influence you not to worry. After all, that’s what parents are supposed to do. In addition, I can’t tell you that your son will never develop diabetes; no one has that crystal ball.

However, I can tell you that, given the values that you have reported while he has been fasting, I doubt that he has diabetes now. The somewhat higher readings taken randomly through the day are not diagnostic, as you already know. If he is gaining weight well and does not have more clear signs of increased urination and thirst, then I think that you should take comfort that he’s doing well. Even if we were to know that he will develop diabetes, I am not certain that we have a real preventative measure. One of the DPT-1 efforts did not pan out. There is another study, but the lower age of enrollment is three years.

In general terms, the antibody screening is more relevant in children over the age of two (if not closer to three) years of age, so I don’t know if the antibody tests would have helped you when he was 11 months old. There are three main antibodies that are often detectable in folks with type 1 diabetes: GAD-65, ICA-512 (also sometimes referred to as IA2 or tyrosine kinase antibodies), and anti-insulin antibodies. In general, the younger the child, the more likely the first two will be negative and the last one positive.

Please try to enjoy your son’s good health and keep your parental alarm on for changes in urination or thirst habits. Also, watch for news and enrollment recruitment for diabetes prevention trials if you are so interested!

DS