Jen M.

When Things Are Almost TOO Good

Several months ago James started using a new insulin pump that integrates pumping technology and continuous glucose monitoring (CGM) technology. All I can say is wow. What an absolutely incredible innovation. It is (almost) everything that I dreamed of having all those years ago when he was first diagnosed with type 1 diabetes. This system reads his blood sugar every few minutes and then, based on a combination of previously determined insulin settings and predictive technology, it makes adjustments on how much insulin to distribute to keep James’ blood sugar amazingly stable.

So how well does it work? It works great. No complaints here. Except for maybe one. Maybe it works almost too well.

Let me explain. When James was really little and we didn’t have CGM technology yet, I had to be constantly aware of what his blood sugar was doing. I checked at all the recommended times, prior to meals and two hours after, before bed and upon rising, and sometimes at night. But I also checked all day long. If he was super active, we checked blood sugar. If he was really inactive, we checked. If he seemed like he was quieter than usual, we would check. And so on. I think at one point we were checking close to 14 times a day. James was littler then and didn’t know how to describe how he was feeling. We caught a lot of lows and many highs, but his blood sugar was really pretty under control.

Fast-forward to today. My teenage boy has a CGM that doesn’t require finger sticks basically almost ever. This isn’t a bad thing. We love this! It keeps his fingers healthy so he can play his guitar chords without pain, and what’s better is that instead of getting only 14 data points (the height of what was possible when we checked so frequently), we get hundreds every day. And it is also very accurate!

Then on top of that, his nighttime blood sugars have transformed. We always strive for good nights. This is one secret for having a good A1C. But with this new pump, it’s almost effortless. He goes to bed in range every night, and we get nearly a straight line overnight unless something is really off.

So here’s the thing. Since things are so easy now — nights are nearly perfect, lows are far less frequent, no need to actively check blood sugar — I’ve noticed that we occasionally lose focus on the diabetes thing. When we were checking so many times a day, diabetes became the center of the rhythm of our life. While I don’t lament letting a device take over that stress and strain, I do feel that I often now err on the side of not doing enough intervention.

After some reflection with James, we’ve determined that there are a few ways that we could really step up our diabetes care while still taking advantage of the easiness of his current system.

We’re going to take time once a day to look over trends and see if we’re seeing any highs that seem to be chronic, and we’re going to try to troubleshoot those. We’ve noticed that while nighttime numbers are often perfect, daytime numbers are much less so. James still has to input carb information into his pump. He’s great at this, but he could be better at the timing of dosing insulin. So we’re working on timing and also on doubling down on carb counting. We talked about it, and we’re using a few new tools to try to get that just solid.

We’re also looking to see if there are any manual device settings that we can improve upon. One thing we noticed is that James runs high in the afternoons. Doubtless part of the reason is that he eats a lot of snacks in the afternoon. Working with our endocrinologist, we’re thinking of increasing the insulin sensitivity so that he can respond quicker to any high blood sugars and get his numbers back into range.

Overall, we love this system. But we don’t want to lose our focus and momentum simply because something has become so easy. We want to have great nighttime blood sugars and few lows and we want to make smart, thoughtful decisions that keep James in range for as long as possible every day. Right now we think that is best achieved by daily assessments. James likes to do this at night. We feel that if we can give five minutes of good concentration on his numbers nightly, we’ll get better numbers for all the rest of the minutes of the day, and this will be the best way to optimize already fantastic technology.

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.

Related topics:
The Hour of Power (Literally)
What I Learned by Trying James’ CGM Device on Myself
People in the Know: What Is Looping?

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