What is a good HBA1C for children with Type 1 Diabetes? You might be suprised by my answer, bare with me on this one, I’ve had an epiphany! Let’s get the facts out of the way first, NICE Guidelines have recently changed, reducing the target HBA1C from 7.5% (58) to 6.5% (48). Currently less than 20% of children in the UK are achieving the the old target, so it seems on the surface to be an extreme measure and many parents of children with Type 1 Diabetes worry the new target will make them feel like a failure.
Personally I embrace the new target. Why? Studies have shown that an HBA1C of 6.5% presents the least risk of future complications to our children, when also taking into account risks from Hypos. I read this before the guidelines were changed, a couple of years ago, shortly after my son’s diagnosis. Since reading that, it seemed natural for me to aim for it. To date some of the time we’ve hit it and most of the time haven’t been to far from it. Put it this way, if someone asked you to choose your HBA1C….you’d choose the 6.5% over the 7.5% right? Also research shows that if you have excellent control in the first years following diagnosis, this acts as some kind of protection in later life, even if during the teenage years control goes out the window. That is a huge motivator to me. If I take the burden now whilst he’s young enough to let me, I can make a real difference to his risk of complications later in life.
However there are times when it just won’t be possible to hit the target figure, at our clinic appointment last week I was really disappointed to find out Jack’s HBA1C this quarter was 7%, down from 7.3% (our highest to date). The team were hugely supportive but they could see how disappointed I was. Yes I did feel like I was failing, even worse I felt like I was failing my son. I know many people would love to have these results, especially for a child in full on puberty, but these were not good results compared to what we had been achieving.
I spent some time speaking to other parents over the last week and it got me thinking. What could I have done differently to get better results? Our problems during that time were due to hormonal highs overnight, we also had plenty of hypos (more than our fair share) that resulted in rebound highs. Though the last few weeks it had settled down leaving us with fabulous, blood glucose numbers, right up until a virus hit, the week before clinic and we spent 5 days pretty much in double figures. During this quarter we had also had a fabulous 2 week Christmas break, school holiday highs always hit us.
Here are a couple of our graphs from the last 6 months….both totally different from each other. One day, the stars aligned and the moon and tides were right, the other day….well you can see the difference a virus makes. If you are a parent of a child with Type 1 you won’t be surprised to know I worked a darn site harder at getting control on the bad day.
After the conversations I had with other parents, I realized something. I’d been using all the tools available to me. Jack is on an insulin pump, he was using the Freestyle Libre, and in the last couple of weeks we’d moved to the Dexcom CGMS, as I felt we needed the alarms to catch the highs, sooner. I was downloading the data and looking for patterns more than once a week, I was making changes as soon as patterns appeared and when I couldn’t work out what needed changing I would use our fantastic team, phoning them up looking for help. At night I was testing regularly and correcting any numbers out of range, but many of them were stubborn, hormone highs that took multiple corrections to bring back down into range. We carb counted accurately whenever it was possible to do so, didn’t miss insulin doses and we were checking numbers multiple times a day. Could I have done anything different? I really don’t think I could.
So now I’ve come to a conclusion, yes of course an HBA1C of 6.5% is excellent but it doesn’t mean that other results aren’t good or even excellent too. I now believe a good HBA1C is any result that is achieved by doing everything in your power to get the best results, if you are already taking advantage of the technology that is available to you, not everyone can afford to self fund CGM or even the Freestyle Libre, if you are doing all the testing that needs to be done, if you are correcting when you need to, if you are making changes when you can, if you’re using your team to help between appointments, if you know that there is nothing more that could be done within your power or financial means, to improve that number, then I say it’s a bloody good result! It’s the best result that you could achieve under those circumstances.
A good HBA1C result shouldn’t be measured by just the number. There are hundreds of reasons why children’s HBA1C results will fluctuate and why the 7.5% or even the new 6.5% target won’t be hit at times, puberty, forgetful teens, illness, the list goes on and on. A good HBA1C has to be the best number you could achieve, when you’ve done everything you can within your personal circumstances.
Quality of life needs to also be taken into account…should we stop going to restaurants for dinner sometimes as we can’t carb count accurately, should we stop our children from days out with friends, no we shouldn’t. It’s important to strike the right balance between doing everything you can but not letting Type 1 Diabetes stop you from living life.
If you’re reading this feeling like you’re child’s HBA1C results are not good enough, ask yourself, am I using all the tools available to me, am I doing all the things I should be doing, like testing regularly, carb counting accurately when it’s within my power to do so, am I using my team to their full advantage between clinic appointments? If the answer to this is yes, then give yourself a pat on the back, you’re doing a great job, you’re achieving the best results you can get at this time. If the answer to these questions is no…then look to see what you can change, make those changes, maybe it’s time to try something new, those previous numbers were in the past, every day with Type 1 is a day to wipe the slate clean and start again.
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