I have worn the Dexcom CGM for a few years – ever since the Navigator stopped being available in the States – and I know it makes a difference in my diabetes management. It can help me avoid some lows and help me not overcorrect for the highs. It also helps me identify when a high bg is persistent and more insulin is called for. My A1c has always been in range, but with a CGM I can achieve less variability in my bgs and that makes me feel better more of the time.
As soon as we had the opportunity to get the Bear on the CGM, we did it. This mainly involved waiting until she had enough physical “real estate” to accommodate both her pump site and a CGM. We went with the Dexcom because of it’s longer wear-life and reports that the insertion was less painful. This was before the pediatric approval but we were lucky to get it covered. Of course, I went into this feeling very positive – between my own experience and reading about many positive experiences with CGM use and kids on the DOC.
I’ll say up front that it is a good tool. There are times when knowing how her bg is trending makes the difference between a too high or too low that we otherwise would be reacting to. And sometimes it even saves us all some sleep. But it hasn’t been in the same category as my own use.
1. The CGM is nowhere near as accurate on the Bear as it is on me. Even before I upgraded the software on my Dexcom the difference between my results and hers was huge. We know to double check any reading that would suggest treatment with her meter but a very unexpected number can still give you a shock. And it really seems to “bother” other caregivers in her life — teachers, babysitters, long for an explanation of how the CGM can be reading 320 and a finger stick results in 185. What did they do wrong? What should they do? It just adds another layer of confusion to an already unpredictable situation. I hope that when we upgrade the software in her Dexcom we will get improved accuracy, but I’m sure it will still be less accurate than my use.
2. Site Rotation. We have been using the Bear’s arms for the Dexcom sites. She wears her pump on her rear and hasn’t been willing to try anywhere else for that yet. We alternate arms and try to keep the sensor on for as long as we can (1 – 2 weeks usually though as with accuracy sensors don’t last as long on her as they do on me) but I still worry about having enough different places to insert. *Note the word “willing” – that is operative in pretty much everything that I find tricky about the CGM and the Bear.
3. The adhesive is much more iffy on her than on me. I feel like I do a lot more prep before insertion and then way more taping and re-taping just to keep the sensor on for more than a few days. I’m sure this has a lot to do with activity & how careful each of us are when putting clothes on and taking them off. Also, even though she doesn’t have severe irritation, there is more noticeable redness from the adhesive (and probably all the extra prep and tape) on her than I ever notice on my own skin. Yes, my skin is a lot older too :)
4. Emotionally, the CGM has been hard. She always resists an insertion even though new pump sites aren’t much of an issue. Even when she goes through one or a couple of insertions and says to us “that didn’t hurt as much as I thought,” the next one is still a fight. Through cajoling, insisting, bribing we manage to get her to suffer through it, but every few months she reaches the end of her rope and the resistance escalates. At these times we usually end up taking some sort of break from her wearing it. I was probably naive about this part of adding the CGM. I know better than to think that because others haven’t had much resistance from their child neither would we. And my wearing a CGM of course doesn’t guarantee that she won’t resist it herself.
So, here we are. Her sensor fell off last Thursday and she begged for a break. She has been wearing it nonstop for a while so I said ok – we talked about it and agreed that we would put a new sensor on on Monday before she returned to school on Tuesday. Monday night I said, “Let’s remember that we have two things to do tonight: a new pump site and a new sensor,” really expecting her to say “ok” or at least to reluctantly go along. I’m sure you can guess what really happened… Sobbing. Heartbreaking tears and my strong, energetic girl hunched over, head on hands, looking totally defeated. Cue mom’s guilt (it is my fault she has T1; and I’m the one who pushed for the CGM), grief (what is this doing to my child?), frustration (self-explanatory), and indecision (do I force this on her or do I let her not wear it?). Through tears she told me how much it hurts, that it’s no use to wear it (“it’s never right!”), that she never wants to wear it again. I told her she could have a few more days break since we are going to the CDE on Wednesday. I said we could talk to the CDE about it and see if she knows what other kids do to make it hurt less. But that she would have to wear it at some point. I tried to explain a little about why the CGM is helpful even if it doesn’t always match her meter (all things we’ve talked about a lot).
Later, after she had calmed down, I talked to her more about it. At that time she didn’t cry but it was almost worse. She asked why she doesn’t get to make any decisions when it comes to diabetes, why is it never “about me.” She said she wished they never invented a CGM. She asked why we would want her to do something that hurt her so much. She hates diabetes, hates having diabetes, hates explaining diabetes. She doesn’t care what her A1c is. She doesn’t care about being healthy.
I know she’s just a seven-year-old kid and can’t see this from my perspective. I know that it’s our job to care about her A1c as it relates to her overall and long-term health. I know that’s why we make the decisions about these things and she doesn’t get to yet. But I would make it different for her if I could. I would take on twice the T1 myself if that meant she didn’t have it.
I know what it feels like to have a blood sugar at 48 or at 480. I know what a pump site insertion feels like and what it feels like if it isn’t in a good spot or if it gets pulled out. I know what the CGM insertion feels like – and I can tell you that it does hurt, even the best ones still hurt more than a finger prick and more than an injection. And I can tell you that it hurts both when the needle goes in and when you pull the needle back out. So, I get it. I can truly empathize with what she is physically feeling. And I wish I didn’t have diabetes so I can empathize with some of what she feels emotionally. But, I’m not 7. Even with all that we do share, I am no comfort when she feels out of control, forced into doing something painful, different in a way she can’t fully articulate.
I hope that all of us talking about it with the CDE tomorrow will at least move the conversation forward to her being able to accept the necessity a bit more even if she won’t be able to agree with it for a while. Maybe we can try some numbing cream for the next few insertions like we used to do for pump sites. Maybe ice? Maybe some day she will let us try some other sites (both for pump and CGM) and we will discover that some spots hurt less. In the meantime, any and all suggestions welcome. Would love your comments and thoughts.