{Diabetes Management} Thoughts on the Continuous Glucose Monitor (Part 1)

by Leighann on October 8, 2012

Was that a long enough blog post title for you?

I think that when we become comfortable in the current diabetes regime, whatever that may be at the moment, it’s difficult to consider changing it up. If things are going well, why add in another variable, right?

We were doing just fine on multiple daily injections and weren’t really considering a pump. But then I met Allison and Kerri at BlogHer a few summers ago (and BlogHer has nothing to do with diabetes, but I was happy to make these IRL connections). Both had been diagnosed as children. Both gave me some advice about insulin pumps.

Up until that point we were kind of thinking about getting one some day, but this really lit a fire under me to start researching and asking questions.

That fall Q started using the OmniPod and we never looked back.

(And as a side note, Kerri uses a traditional pump and Allison is actually on a pump break right now.)

So we were going along swimmingly with the pump and then I started to notice more and more kids with a continuous glucose monitor (CGM). But again, I thought it was something we might consider at some point, but we weren’t gung ho about it yet.

My major concern was making Q wear yet another piece of equipment on her body at all times. And not just the sensor, but also the receiver. One of the things we liked about the OmniPod was that she doesn’t have to have the PDM on her person at all times, she just has to wear the pod. With traditional tubed pumps you have to find a way to carry the pump itself and for our child, we didn’t want to deal with that.

(Insert my standard disclaimer that none of this is medical advice, ask questions of your endo or CDE. These are the decisions that our family made for our child and every pump has its pros and cons. And there is nothing that says that it’s a natural progression to go from MDI to a pump. Whatever works for you and your family.)

I was so sleep-deprived from one or more overnight blood sugar checks (again, not telling parents they should or shouldn’t check their children overnight, but Q has some afternoon/evening physical activities and they often make her go low in the middle of the night), that when I had the opportunity to try out a CGM for a couple of months, I jumped at the chance. (Medtronic disclosure.)

It was not so easy to make Q go for it. In fact several times she said that I was forcing it on her and she didn’t want it at all. I think a lot of that stemmed from her fear of the harpoon of a needle that the Medtronic CGM insertion involves.

(And if you recall I had a tête-à-tête with the general manager at Medtronic about perceived pain versus actual pain in which I voiced my concerns and told him that my daughter was absolutely terrified of that needle.)

But we found that we really liked the contextual information that the CGM gave us. If she was 100 at bedtime, was she dropping or rising? And OMG, she was having crazy post-breakfast spikes that we never knew! And wow, her overnight basal rates are spot on.

Medtronic mySentry CGM

I found that I slept better knowing that the CGM would likely wake me if she was dropping or going too high. I really liked having the mySentry on my nightstand, though I hated how incredibly bright it was. I think you could help land an airplane with it. I loved being able to look over and see the graph, the arrows, and her BG. Peace of mind.

Now let me say that the first night with every new sensor was absolute hell for me and I dreaded those nights. It would always be way off in those first 12-24 hours. And it would alarm high and low over and over again waking me up when she was perfectly in range. (And maybe this was just us or we hadn’t figured out how to use it yet.)

But the other nights were great.

During school conferences I asked the classroom teacher if she felt the CGM was helpful or a distraction (all the alarms!) and she said she liked it because it helped to catch lows and they could treat them.

We decided at the end of our trial to go ahead and seek insurance approval. I had planned on allowing Q to take breaks from it if and when it was too much and not make her wear it every minute of every day.

But where we ran into an issue is that we really wanted the mySentry if we were going to use the Medtronic CGM. The mySentry is only compatible with their Revel insulin pump, not with their stand alone CGM (a HUGE oversight in my opinion). We don’t want to use a pump with tubing. To get the mySentry we’d have to get the Revel. The Revel can’t be coded as just a CGM and the insurance would consider it a pump. We didn’t want them to pay it out as a pump because then we couldn’t upgrade our OmniPod when the time comes.

So I nixed the Medtronic CGM and mySentry.

Now, if we were already using a Medtronic pump, you had better believe that I would fight insurance if I had to to get the mySentry paid for.

But we’re podders and want to stay that way.

Thus began my quest to get my hands on a DexCom to see if we liked it. This proved difficult yet easy…

(And you’ll have to come back next week to hear more. Can’t write a 4,000 word post, now can I?)

Further Reading

Medtronic Diabetes Advocate Forum: The Event (I talk about perceived pain versus real pain.)

All posts about continuous glucose monitors

Medtronic Disclosure

In full disclosure, Medtronic provided us with the necessary devices and supplies for this three-month trial at no cost to our family. A prescription was needed from our doctor. Medtronic provided in-home training to us, as they do for all of their customers. They did not ask me to write about the products or trial and I am free to write whatever opinions I have about the experience. I am not being paid by Medtronic.

All images are copyright D-Mom Blog and D-Mom Media and may not be copied or reproduced without express written permission.

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{ 11 comments… read them below or add one }

1 Katrina Huckabay October 8, 2012 at 7:42 am

I am interested to hear your opinion on the Dexcom. We are currently considering getting one

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2 Jennifer Yoder October 8, 2012 at 8:13 am

Yes you can write that many words! Lol! This situation is exactly what we are going through, my daughter just turned 10 and we have been podding since June and I have been doing 2 to 3 night checks since then also, which is exhausting especially since I work outside the house full time. I also wanted the mySentry, since reading about it. Thank you for doing the research and saving me so much time and effort. I will be awaiting on pins and needles to find out about the DexCom. Thanks again for your willingness to share all your d info, this mom truly appreciates it.

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3 Leighann October 11, 2012 at 6:12 am

Hopefully DexCom comes out with a remote monitor similar to the mySentry. DexCom announced FDA approval of their next gen device, the “Platinum,” this week and it has a range of 25 feet!

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4 Melissa October 8, 2012 at 11:18 am

How did your daughter feel about wearing the CGM? Any pain? We are preparing to get a pump for DD (8) and we are going with the Medtronic Revel and hope to follow it up with the CGM. I am concerned about her having two sites, but I love the fact that the receiver and pump are one device.

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5 Leighann October 11, 2012 at 6:10 am

Honestly, my daughter found the Medtronic CGM insertion to be more painful than the DexCom. Part of that was seeing the big needle. But lots of kids use the Medtronic Revel and CGM with no issues. You might ask about numbing cream for the CGM insertion. We don’t use it for the pump, but we do for the CGM.

Now that we’ve been using the CGM for about six months, my daughter really likes being able to look down and see it.

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6 Jason Adams October 8, 2012 at 11:21 am

I too look forward to next week’s post on the DexCom. We are waiting for the SOLO to be approved next year (I work for Roche) and combining it with a Dexcom.

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7 Leighann October 11, 2012 at 6:07 am

Now that the next gen DexCom was announced, I hope we see it integrated with more pumps…and quickly!

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8 K October 8, 2012 at 1:22 pm

Thanks so much for your work and research and for passing along the info. Really appreciate it! Also…just finished reading your book. Loved it and there were several things in there that have really helped our family. Our 7yr old was diagnosed (at age 6 1/2) at the end of last year. When I finished reading I wanted to turn back to the beginning and start again, I think for the comfort and support I felt in reading about your experiences..and those of the contributors.

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9 Leighann October 11, 2012 at 6:05 am

Thank you for reading the book! If I offered nothing else, I wanted to give comfort and support, especially to newly diagnosed families. I’m so glad the book was valuable to you.

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10 Julia October 9, 2012 at 6:52 pm

Perceived pain, my eye! Minimed sensors require EMLA…. I would not have the nerve to insert one without numbing thoroughly. And many is the time our DD was in pain after the EMLA wore off. The last time she wore it, she was in excruciating pain (we had inserted in the arm and must have been near a nerve). Dexcom, she did not need or want EMLA, told us she felt the same or even less pain than that of a pump site change. We have a Minimed pump and prefer it greatly to Animas; hence we wanted integration. We still have a Ping we use in the summer. Currently, she does not want to wear Dexcom, not because of pain, just because she does not want to wear two sites and carry another receiver. If Dex intregrates with Animas, she might wear it then. From personal experience Dex wins hands down. But I would ask any parent to trial both devices with no Lidocaine. I’m sure words “perceived” pain would never be used again. If it looks like a duck, walks like a duck, feels like a duck… it’s a duck. Minimed needs to get their act together. These are pediatric patients with very little body fat.

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11 Leighann October 11, 2012 at 6:02 am

Thank you for sharing your experience, having used both devices. I agree, even with numbing cream the Medtronic one would hurt my daughter. The huge needle made her more fearful for sure, but there’s no denying her that it really did hurt.

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