Tight Blood Glucose Control in a Child with Diabetes: Is it Necessary?

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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.

 

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Comments (7)

  1. “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.”
    I wonder if your doctor was talking to you specifically and not the type 1 pediatric population in general.  Doctors treat one patient at a time – not the “group population” and he may have been trying to help you manage the challenges associated with your son’s care with delicate caution.  I read his words as – “Don’t risk a a fatal incident with your son by trying to achieve the tightest control possible.”  I am almost certain that every doctor’s greatest fear for children is the problem of insulin regimens and hypos.  Best wishes to you and your family.
    Elizabeth Snouffer
     

  2. This is what I’ve always wondered myself. Our son who is 8 has had T1 for 2.5 years now. His latest a1c was 6.3 % this was after 6 months on the pump. However we’ve ranged from 6.8, 6.9, 7, 7.1 and the highest other than dx of 7.5. 

    I have to say when I always saw a1c’s around what our son’s is now I thought that they were risking too many lows. Now with knowing his numbers and what we did to achieve that a1c, I think it’s perfectly fine. He had some lows 50 and below(only a handful) and he still had highs. I think it’s a personal opinion. 

    Ps. We high fived too at the latest a1c it was a huge shock and felt like I got a great report card. 

  3. Steve at

    I am never quite sure what to think when we read stories centered on HbA1Cs. I wonder are we that different. True, we like the low quarterly reports as much as anyone else, but more important to us than even that is how our 11 yr old daughter physically feels when her blood sugars are significantly outside of her target range. As non-diabetics, we can only imagine what that is like for her, but do nonetheless what we can to try and limit those situations as best we can. Not for a lower A1C, but because she just feels better. 

  4. MommaKat at

    Studies to support your doctor’s claim, nice and experienced though he may be, simply do not exist. We do not have any studies that followed T1D patients from diagnosis during childhood through the following two decades, and certainly not any longitudinal studies that did so while documenting tight control, glucose trends, and compared them to the presence or absence of complications of diabetes near the middle to end of the second decade. It would take that sort of longitudinal study, conducted with thousands of type 1 diabetics, to provide scientific support for that statement. Instead, it’s made based on anecdotal evidence given that tight control in children has been championed, and certainly not practiced in large numbers, until recently. Still, type 1 diabetics reaching adulthood aren’t experiencing the same rate of complications of diabetes, so endocrinologists might feel comfortable – even justified – in stating that tight control during the first ten years of diagnosis isn’t that important. So, in the absence of such studies, it is a personal choice. As a parent of a T1D, I look to Mary Tyler Moore and her writings, as well as other less known adults, and hear their voices in saying that while complications of diabetes are fewer and may have been delayed in onset, they still significantly effect quality of life in later years, and serve to shorten longevity. Based on that, and my job to supply my child with the best skillset possible, I believe it is my job to practice and teach tight control in such a manner that she learns to enjoy and live life while adopting tight control as second nature. I want her to understand tight control intuitively, as second nature, and to understand that there may be moments she chooses to relax those constraints, but with full knowledge of the consequences and how to mitigate them in the future. 

  5. Sara at

    We are currently on NR and NPH twice daily and so far a year into this…we seem to be doing alright.
    Were you perhaps speaking about Dr. Mackenzie when you said “In Canada, however, our endocrinologist – a wonderful fellow with a distinguished history of research and teaching…”? He is my sons Endo. It sounds like him and the only male diabetes doc (that I know of) at CHEO.

  6. Stacey at

    We were told the same thing in British Columbia when our son was first diagnosed at 4 years of age.  “That children’s bodies have an amazing ability to heal from the effects of high and low blood sugars.”  Comforting as this was – it appears that’s all it was – comforting words.  I can’t get any real evidence that this is true.  Now I’m just angry.  In Canada, as you said, they put children on treatment regimens that seem to be convenient for the government and school system and not necessarily what is best for tight glucose control.  

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