My son Sacha was diagnosed with type 1 diabetes when he was two years old, and over the last three and a half years, we’ve tried hard to control his sugars as closely as we can. We began in Canada by using NPH and NR twice a day, with limited carb counting, strict mealtimes, and strict carb targets for each meal. In Canada and many other countries, this system is quite common, as it eliminates the need for a mid-day shot – which is helpful when the school nurse post has been eliminated due to budget cuts, and the teacher’s union is dead set against involving their members – and is also much cheaper. Lantus is incredibly expensive, when compared to NPH.
Then, about a year ago, while living in Mexico, we moved to Multiple Daily Injection, the system most common in the US – Lantus once a day, plus NR at each meal. It allows for great flexibility in mealtimes and food quantities, but requires more precise carb counting, and a shot with each meal or snack. We did this in preparation for the transition to the insulin pump, which my son began a few months later.
Now, with the pump, we weigh everything he eats, count carbs carefully, and correct his blood glucose frequently, waking up at least twice a night to test and correct. Over the last 3.5 years, in other words, we’ve moved from a much looser system of diabetes management, to a more tightly controlled one. We sleep less, work harder, bother Sacha more, but get better HbA1Cs.
Even within the pump regimen, however, there are choices that parents can make. Some parents and caregivers are much looser, while others strive for more tightly controlled blood glucose.
The science behind these varying strategies is unclear to me. There is little doubt that tight blood glucose control, over the long term, is best for anyone with diabetes; we all know that average HbA1Cs of 7% and below are desirable, if difficult to maintain, and are correlated with lower risks of long term complications.
In Canada, however, our endocrinologist – a wonderful fellow with a distinguished history of research and teaching – told us that for the first decade of a child’s life with type 1 diabetes, tight blood glucose control isn’t all that necessary; children have natural protections from excessive sugars in those first years, as long as they don’t go into DKA. And the risk of lows, he argued, was such that tight control might in fact be counterproductive. Kids’ hormones are in constant flux, their bodies are small, and they can swing from high to low at the drop of a hat. Indeed, the extreme variability of blood sugars in young children with diabetes is clear to anyone who has relevant parenting or child care experience.
Yet every time I’ve asked our doctors in US and Canada for the scientific literature behind the “don’t worry for the first ten years” proposition, they’ve drawn a blank. They are all wonderful doctors, but this particular claim seems to be something that is taught in textbooks and med school, but for which there isn’t an easily retrievable body of recent empirical evidence. No one says, “ah, it’s in the xx study.” Everyone can cite off the top of their heads the studies on the long term complications of diabetes in adults, but no one seems to have a similarly quick response to questions about the first decade of a child’s life with type 1 diabetes.
I’d love to know what, precisely, is the state of the evidence. Are there good randomized control trials, or is the evidence less persuasive? How much does it matter in the first years if my son’s blood glucose control isn’t excellent? Sacha’s average HbA1Cs are great, but should we in fact be more relaxed? Are we risking too many lows? Are we being too strict or compulsive, and will this have negative long term consequences? Will Sacha learn to hate his diabetes as a result of the tight control, and exercise his rebellious streak when he gets older? Will tight blood glucose control today lead to an “I don’t care about my diabetes” attitude in his teens?
After all, many people strive for perfection at work, at home, and at the gym, and some transfer this anxiety to their children with diabetes. The quarterly HbA1C test can quickly turn into another exam that striving parents want to excel at. My wife and I are always gratified when we see a low score on Sacha’s test; we even high-fived at the latest 6.1%. Is this good parenting of a child with type 1, or are we being too obsessive? As a social scientist interested in policy, I know that every well intentioned policy has its negative and often unforeseen consequences. I am tortured by the possibility that all of our efforts today are going to inspire a counter reaction in Sacha ten years from now. And worse, that our efforts to keep his sugars low are not really all that necessary after all.
Perhaps there are no clear answers; it may be that there is insufficient evidence one way or another. But for all of us with young children with diabetes, it would be great to know.