CGM Blues Redux

This should be shorter than the original post on this topic…

The CDE said what I expected: You are the parents, you make these health decisions. Best thing is to be consistent & clear about what is non-negotiable. (paraphrase)

Of course, I know that. I think what I was really looking for was how to approach the emotions. But I also know that our (great) CDE’s job/strength is to manage the diabetes – the physical parts of it, the numbers. The social worker is who I need to talk to for the psychosocial pieces.

The CDE did give me the e-mail of another mom with two T1 kids who both wear Dexcoms so that’s another person I can reach out to. Hopefully she doesn’t just say that she has never had her kids resist this hard to the sensor.

The good news? The Bear agreed that we could insert a new sensor tonight and though she was tense, she went right along when it was time to do it.

The bad news? Before the 2-hour calibration window was up the sensor failed. I tried restarting it, but same error message. Called Dexcom & through the conversation realized that I had used an expired sensor. Dexcom couldn’t say for sure that was what caused the failure, but it does mean they can’t replace it. No big deal there but now I feel awful. A chance to have a positive experience (or at least less negative) and now I have to tell her in the morning that we need to take it off. It’s unlikely she will agree to put on a new one in the morning without her dad here (it usually takes the two of us – one to hold/comfort & the other one to insert) so it will need to wait until tomorrow evening. I usually cut myself at least some slack with these kinds of mistakes – they happen often enough with diabetes that you have to let some of them go – but this one I should have paid more attention to.

This too shall pass… but for now I still have the CGM blues – mainly over the distance between managing the numbers and managing the broken heart.

Follow-Up: The Bear cooperated to try a new sensor tonight — this one also failed after only about 25 minutes. The support people are always so nice… They are sending a replacement sensor for this failed one. I did explain my concern that here is a kid who is already reluctant to wear the sensor and I’m going to have to insert the 3rd one in as many days with no way to know if that one will fail as well. Could there possibly be another problem, I asked – could it be the transmitter or receiver? Almost always a sensor issue according to support. And it would be very rare to have a whole lot that was defective. Still, I went through the sensors we have left and chose one with a different lot number – only 2 numbers different, but still. Feeling discouraged.

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2 Responses to CGM Blues Redux

  1. Karen Joseph says:

    Leslie, I just saw your link to this on Twitter. I am so sorry to read about the CGM blues with your daughter. After all that you have been through, how upsetting to discover that the sensor was expired! My heart just aches hearing your daughter express all of her frustration about having diabetes — and hearing your own anguish.
    My son has had T1 for 8.5 yrs now. He’s fourteen. He’s been wearing the Dexcom CGM for 2 yrs. He refused any and all devices for years. We did injections for 7 years and they would ask about the pump nearly every time, knowing that it would be such a helpful tool. I kept wondering when our Endo and CDE would tell him or us that it was time to put him on the pump. They never did, of course. I finally asked and they said if he doesn’t agree to it, it won’t work. He only changed his mind because there was talk that he should learn to do his own shots from the school when preparing for middle school and he decided he would much rather have a pump than do that… Getting him to try the CGM was really hard. Lots of tears, fearing the pain. Somehow he’s gotten used to it.
    I wish I had some pearls of wisdom to share but mostly I can offer empathy. I appreciate your descriptions of the Dexcom, as I haven’t experienced it first hand. I will say that my son’s CGM accuracy has only recently improved. When I learned that some people bolus using those numbers I’ve been shocked as my son’s hadn’t been that reliable. He wears his sensor in the arms as he found the CGM to be quite painful in the belly. He had one shot on the rear once that hurt terribly as a young child and absolutely refuses all devices there. We worry about sites, too.
    Actually, I do have a suggestion. I’m the mother of three kids and my son with T1 isn’t the only one with special issues. Learning disabilities and anxiety are in our parenting repertoire as well. As a former social worker, I’m a big believer in mental health services and I’ve used this resource with more than one of my children when they were struggling with great results. Of course, you know your child best so disregard any suggestion that won’t work for you.
    I hope that the tide turns and these issues improve! Best wishes to you and Bear!

    • Thanks for your comments. It always helps to not feel so alone in these issues. I’m also a believer in mental health services & my therapist may have saved my life in many ways after my own diagnosis. We have been meeting with the social worker at the Bear’s endo practice. So far the Bear doesn’t really say anything to her — none of the things she says to us. She’s still so young… Things have been a bit better – I think that being able to vent to us and have us take it seriously enough to talk to the CDE about it maybe relieved some of her emotions. We’ll keep on trying to give her outlets, support, people to talk to. Thank you so much – your comments really helped.

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