Tips for overcoming CGM anxiety with kids

Technology & Management
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So both of our kids are fairly recently diagnosed (Nov '17), and we’d recently decided to move forward with getting them both on a CGM (Dexcom G5). Their mom and I loved the idea of being able to see the BGL on our phones throughout the day, and during the night, and figured the kids would like not having to have so many finger pokes every day. So we gave it a go for a couple of weeks. Long story short, the anxiety/fear that built in our kids when we had to change the site, has made us decide to go back to checking their levels with the finger pokes; since they are much more comfortable with that process. I believe the appearance of, what essentially looks like a huge syringe on their arm, was a much bigger issue for them than the actually pain/pinch when doing the insertion.

We definitely haven’t given up on using a CGM, but have decided to shelve it for the time being. Even though it feels like a million years ago, I have to remind myself that it’s only been 4-5 months since their diagnosis, and they’ve come so far with the whole thing. I don’t feel like forcing more changes so quickly is the best idea. We’ll just stick with what works for them for now.

With all that being said…my question is for down the road, when we decide to approach the whole CGM process again. Are there any tips/tricks any of you have found for easing the anxiety and fear of this, particularly in younger kids (ages 4 & 6)? We’ve shown them videos of kids getting the transmitter put in, our endo has let them look and play with a "sample"version, and explained it to them as best he can on their level. We’ve talked about it with them quite a bit as well. They seem onboard with everything, up until the point they see the big syringe/needle looking thing come out…then they lose their nerve.

Any ideas are appreciated!
Thanks

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@ryanandjenn Hi Ryan, when I saw the first version of an insulin pump the hair on my head stood straight up. the only thought I had was “I don’t care - that thing is not for me”.

several years later, I could understand the benefits, weigh them against my needs for self-care, and I actually wanted one. and so I got one. and I got a cgm (similar story) . and I did other things I thought were too scary to do at first, when I was mostly (perhaps not completely) ready.

the point is that not everyone wants the cyborg medical device on them. maybe it’s the needle, maybe the “serter”, or maybe it’s the constant reminder that everything is NOT ok. this is difficult. this takes time and understanding.

You have the equipment, you have the sensors (which have expiry dates, so you cannot keep them forever) so maybe when the time is right and they want to experiment, you could let your 6 year old stick YOU with the CGM. this might help with the insertion anxiety because they can see it and your reaction, and it could help you to truly understand the nuances of the pain, and with wearing a medical device, and sleeping with it, and all the tape, and the beeping when it wants a calibration or a transmitter charge… probably during a meal or during a business meeting. (I admit I am being a little silly here, but you get the idea) it could be an all-around learning experience that you can share with your kids and develop a different kind of understanding together.

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Thank you for the feedback Joe! Having them try it on me is a good idea, for the reasons you mentioned. Our doctor had us do the same thing with the syringes when they were first diagnosed; they would inject saline into our arms/legs/stomach, etc. The nurse would draw it up, my daughter would “double check” the dosage was right, and then stick us. It did seem to help her adjust better, and it also was great for us to see what the “pain” was really like.

Just to clarify, we absolutely have no intention of forcing this on either of them. My wife and I had a talk early on that we would expose them to different options, and explain as best we could the pros/cons, which isn’t always easy for young kids to make sense of, but ultimately the decision was theirs. If they want to do finger pokes and pens indefinitely, we’re totally fine with that. I’m just looking for different ideas to try to help them should they decide they want to try it again at some point down the road.

Thanks again!

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Hi. My daughter places her CGM on her upper hip area. Dexcom recommends tummy but she prefers the “fatty” area on her hip. This placement works for her as it is covered by pants and swimwear and is basically unseen by others. It may take practice for our kids to place by themselves but that way they don’t see it all the time either. Hope this helps
VDenerson

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My son has the same issues (he is 4). He has extreme anxiety over getting the new sensors put in, so we have created a sticker reward chart. Once he gets so many stickers, he gets to pick the activity we do as a family for that day (special park, museum, zoo, etc.). This helps a little to quickly calm him down afterwards. I am just hoping with time, his fear will decrease and it will be easier for him.

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I use the freestyle libre sensor and it is a pretty small needle. I don’t know how much smaller it is compared to the Dexcom CGM. The downside is that it does not alert me when I am going low. I have to check for myself. It is very nice though since I don’t have to butcher my fingers as much. It has also helped me avoided lows and balanced my sugars as a result.
The applicator is very easy to use and hides the needle when its punched in. I literally do not feel a thing and it takes a nanosecond to insert. The hardest part I’ll admit was taking it out for the first time but it was the adhesive that made it a slower and more mentally scary process. After the first time its a breeze and it’s so worth the peace of mind that comes along with it.

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Hi Katie, @Katie5, so funny you should mention a sticker chart. We actually started to use this exact thing a couple months back. It’s essentially a laminated “board game”, that when they reach the castle at the end, they get to pick a prize. It can be a new toy from the store, go to a movie or zoo or trampoline park, go out to dinner to their favorite place to eat…whatever they choose (within reason of course :slightly_smiling_face:). We do it for chores as well as changing their Dexcom sensors; so if they clean up their rooms, brush their teeth and so on, without mom or I having to ask/tell them to, they get a sticker. But they get 2 stickers every time they change their sensors. The board has about 30+ spaces so it takes some time to get to the top but it does seem to give them a little extra incentive. They will still whimper a bit for a second or two after the poke, but then they can’t wait to put their stickers up to see how close they are to the top.

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Kimberly,@kimberlyelaine we were actually very interested in the freestyle libre initially. One of my wife’s friends, who’s type 1, uses it and I really like how discreet it seemed compared to the Dexcom. I also liked that it required minimal calibration. What eventually turned us to the G5 were the active alarms , especially with our kids being so young. It was very reassuring to know that while they slept we would be alerted if there was an issue. I thought I read somewhere that they were looking to implement an active alarm type system for the Libre, as well as the sharing, in the next model or via software updates. If/when that happens we may need to re-look at the libre. Thanks!

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@ryanandjenn The idea for the “board game” is one I’ll have to try! I like the idea of a chart that isn’t just for his diabetes management, but all activities to help integrate his diabetes “chores” as just another part of his day. You wouldn’t happen to live in the Pittsburgh area? My son has been struggling with anger about his diagnosis. He was just diagnosed the very end of February and just seems to feel alone, always asking when he meets people if their pancreas works. Did your kids experience this at all and would you happen to have any suggestions to help him cope at such a young age?

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@Katie5 We live on the west coast. As for feeling alone, my kids were diagnosed exactly one week apart back in late November 2017, so they really didn’t get to experience being alone in the sense you’re talking about. Sometimes I’n not sure if it’s a blessing or a curse to have both them diagnosed so close together, but it is what it is I guess.

My daughter (6) went into DKA and was hospitalized for a week after her diagnosis. We then noticed my son (4) was displaying a lot of the same signs (excessive thirst, constantly going to the bathroom). We thought we were just being overly sensitive having just been through the terrifying situation with my daughter, but my wife insisted (and thank god she did), that we get him checked. Sure enough, back in the hospital again…Luckily he wasn’t in DKA and having just gone through all of the training with my daughter, we only had to stay a couple days at the hospital with him.

Having said that, they both went through, and continue to go through, different phases of grief we’ll call them. At their ages, I think it’s difficult to really articulate what their feeling, but they’ll make comments from time to time about “remember when I didn’t used to get pokes? I liked that”, or my daughter once told me, “I wish I didn’t go to the hospital that time so I wouldn’t have diabetes”. As a father, it rips my heart out every time they say stuff like that. But I believe it’s their way of saying that they’re angry, scared, a sense of loss etc. and they have every right to feel that way. We as parents, have every right to feel that way. We’ve been dealing with this as a family for only 7-8 months even though it feels like a lifetime ago. With your son being diagnosed even more recently than that, he may just need more time to try to process everything. His anger may be more about fear, and just manifest itself as anger.

I think as parents, all you can do is love your kids and continually reassure them as much as you can. Even though they’re so young, it’s important to validate their feelings. When my kids make those types of comments, I always try validate what their saying, but not dwell on it. I’ll tell my son, “I do remember when you didn’t have to get pokes, and I liked that too. But we’re still going to go swimming all summer like we usually do, or get your favorite chocolate cake for your birthday” (basically things along those lines to try to reassure them things are going to be ok). I try to remember that they’re also going through a very big change, just like we are as parents, and more than anything I need to make them feel as secure as possible (even if inside I’m terrified at times). Just keep loving him and let him work through those feelings with your help and support and I’m confident he’ll be fine. It just takes time, and it’s different for everyone. Also don’t be discouraged if he backslides a little. I’ll think we’ve got everything under control and we’re past it, and then my son/daughter will have a meltdown because they don’t want to get their “poke” for dinner or something. We just try to show them some patience, give them a big hug, and keep moving forward.

Lastly, I would highly recommend getting in touch with your local JDRF chapter, if you haven’t already. We just recently attended our first event (a BBQ at a park nearby), and it helped a lot with the feeling alone aspect. It was a little awkward at first, not knowing anybody there, but you soon realize that everyone is there for the same reason: to meet and network with other families with type 1. And the kids had a blast! They couldn’t care less about the diabetes aspect of it, it was just a whole new group of playmates and seeing who could build the biggest sandcastle or who was brave enough to go down “the big slide” first. In the long run, it will hopefully develop into some solid friendships as they get older, and in the short term, it gives us parents a chance to talk/vent with others who truly understand what it’s like.

Anyway, I’ve rambled long enough. I don’t know if any of this helps or not, but just keep being a loving and supportive mom and I’m sure your son will do great. I’m on these forums fairly often, even if I don’t post much, reading and learning from everyone on here so hit me up if you ever need to talk.

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@ryanandjenn Thank you for the advice. It is definitely helpful to hear that others have experienced some of the same struggles and emotions as our family has as we continue to navigate our new normal. Some days I feel like we are finally in our groove, and others like you said, we take a few steps back. It is so hard as his parent to see that he doesn’t feel well or that something we know he must do to keep him healthy and safe are things that terrify him. Hopefully with time and support, we will make little strides every day.

I am going to take the advice to get involved in the local chapter and find an event we can go to and I appreciate your offer to be a resource to talk. I know that I will need that support from someone who truly understands often!

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Thank you all for your questions and comments. This grandma of a recently diagnosed 4 year old is learning so much!

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It looks like this was posted last year but I still wanted to share a tip with parents that may be struggling with CGM or pump site-change anxiety, especially with little ones. Our four year old was diagnosed this past New Year’s Eve 2018 and we quickly realized after receiving the Dexcom that changing her site was not going to be easy. She would have horrible panic attacks and cry, shake scream and flail around on the floor. We finally decided that if she could sleep through the finger sticks on the middle of the night that maybe she could sleep through insertions.
Another T1D mom suggested that we try lidocaine to numb the area which really helped as well. So our new routine became waiting til about an hour after she fell asleep, placing lidocaine on the site, then waiting about half an hour, and then turning on a sound machine so she couldn’t hear the clicks when we did the insertion. This was such a success for us that we decided to do the same for her with her pump as well.
I hope that some sweet family will read this and that we can save you weeks or even months of anxiety during site changes.