I'm sure plenty of you have children who use both a pump and a CGM. My daughter, who will be 5 next month, currently wears pods and we are considering getting the Dexcom G4. Well, I was all in for it: our doctor has already sent the letter of medical necessity to Dexcom and they have already verified our benefits. All that's left to do is officially place the order.
But my husband is somewhat opposed. He agrees with me that it is in her best interest, he but can't bear the thought of her wearing another device. I don't like the thought of it either, and I'm especially anxious about the insertion (the pod is so easy and painless!), but I've always felt that CGM is the missing piece of the puzzle, so to speak. That it could be so educational and enlightening, not to mention allow me to sleep through the night unless it alarms that she falls below her threshold.
So I know all the pros for it on paper, but how is it in actuality? Is it worth having your child wear another piece of hardware on her small body? In your experience, what are the pros AND cons?
My daughter is 5 and wears both the Pod and the G4. She has been wearing the Dexcom since she was 26 months old.
When we first got started, I had those same thoughts about hating to have her wearing another device. All I can say is that we got over that in a hurry and we would never want to be without the Dexcom ever again. It is worth its weight in gold.
Insertion is easy, don't worry about that. Sure, you have to depress the plunger yourself, but it's just a click click and you're done. Our sensors usually last about 2 weeks so we only have to do it twice a month. We use the numbing cream just to make it extra easy.
The benefits of living with the Dexcom far outweigh any cons. My daughter is so used to it she doesn't notice it at all, similar to the pump. Her A1C dropped over a point once we added it and the best part is that we do it safely, knowing that we're not having hidden lows. It gives us piece of mind at gymnastics, dance, bounce parties, the splash park, with caregivers, etc. We eat whatever we want, knowing we can use the cgm data to tackle it. I just can't overstate the level to which we rely on it.
The only major con I can think of is expense, if that's something you have to deal with. We used to pay out of pocket and that wasn't fun. Other than that - sure, do I wish that my daughter didn't have to wear devices? Of course I do. But she has diabetes. This is what it is. And the Dexcom helps us to live with diabetes in the best way possible. It is more freedom for her and us.
In all honesty if I had to choose one to keep - the pump or the CGM - I would choose the CGM hands down. The Dexcom has saved my son from going too low more times than I can count. He is four, and for a child of this age I think that the Dexcom is absolutely priceless. The information that it provides is extremely helpful in tightening control and seeing those trouble areas that you may not be aware are even happening.
The insertion for us, is nothing - he doesn't even really notice that it happens. He wears it on the back of his arm, and I don't think he even notices it is there anymore. My husband didn't really know what it was in the beginning, he didn't understand why I was pushing so hard for it - but now, I know that there is no way he would ever want to give it up.
I know that it is another piece of equipment for your child - and that is something hard. It was hard for me that my child has to be hooked up to anything at all - I just want him to be able to live a normal life.
But in my mind - I want to do the best that I can for my child, I want to come at this disease with everything I can, to attack it, to prevent it from affecting his life - and this tool, this Dexcom along with the pump is the best possible way for me to do that. For me, that far outweighs the small part of having something attached to him.
I'm not saying that parents that don't have it or don't want it aren't doing their best too - just for me, this piece of equipment for my child is part of the best I can do for him.
To me - the only con, is that it has a 2 hour start up period - that two hours I feel like I am blind again, not being able to see what the diabetes is doing, but compared to all the pros I feel like we have - that is nothing.
The other thing I told my son is, since the next "miracle" coming down the pipe is the artificial pancreas, he's going to have no choice but to get used to a sensor. This was really what pushed him to try the new DEX. He saw that this was the next step toward using the artificial pancreas/closed loop system. Still not a cure, but our best hope until then!
Wow, thank you both so much for your quick reply! I'm glad it's all positive. Raisingainsley, that's amazing that your daughter's A1C dropped by a whole point! And Mary, I feel exactly the same - I want to do everything I can to learn as much about T1D so I can pass it on to my daughter, and I feel CGM would be an excellent learning tool, in terms of learning how her body reacts to different foods and how her BG affects her moods or vice versa.
So another question I have is: I know you're not *supposed* to dose insulin based on CGM readings, but do you? How accurate is the G4? I've heard it's much better than the 7 was. How easy (or hard) is the learning curve in terms of knowing what to do with the numbers and bolusing?
Shana, thanks so much - this is all so great to know!
We put Eric (who is now 6 1/2) on a CGM when he was three. I would say it was absolutely worth it even though it was far from perfect. He is no longer on it because he developed an immune response to the MiniLink sensor wire — probably an allergy to the gold used in it, that's the most common problem — but given the opportunity I would put him on a Dexcom in a heartbeat.
Here are the cons:
• Not always accurate, esp. when BG is rising or falling fast; there were a number of occasions where it alarmed that he was high/low and I found him considerably higher/lower than the CGM told me he was — but, of course, the flip side of this is, if not for the CGM, I wouldn't have found out about it until we had a true crisis on our hands, because Eric doesn't always get symptomatic, especially in regard to extreme highs.
• On days his BG was particularly unstable, the CGM alarms drove everyone crazy — it was especially an issue in school
• There is a tendency that one must fight tooth and nail to accept the CGM's data and not double-check it because you don't want to keep poking and poking your kid... but one learns pretty quickly that with CGM info, it's ALWAYS got to be "trust but verify".
• CGM alarms in middle of night can be... alarming, and your sleep is definitely interrupted frequently. On the other hand, just knowing the CGM is there actually reduced my nighttime anxiety enough that I slept better DESPITE the interruptions... and I could hear the alarm from Eric's room and would rouse even from deep sleep if it went off. Over time, I learned to wake up, go check him, take whatever action was needed (juice or insulin), and go back to sleep without too much trouble.
• Potential for infections increased. Even so, in two years of CGM-ing, we had only three really bad staph infections, and two of those were related to the allergic reaction he developed near the end of our stint with it. As I mentioned, Dexcom sensors have a better track record when it comes to that sort of thing.
• I started hearing CGM alarms when they weren't occurring. You know, like, when I was at work and Eric was 15 miles away in the daycare. However, on at least three occasions, I went and checked him when one of these faux alarms woke me from sleep and found that he was trending low — the CGM would've gone off within a half hour anyway. I like to think my brain waves had keyed into the CGM data stream and had made the decision to act before the alarm sounded.
• Overnight BGs became much easier to manage once we knew what was going on in the wee hours. I know, you're supposed to do basal checks once a month, but at least for me, my exhaustion levels forbid me doing a proper basal check. The CGM took that necessity off my shoulders, and the CGM data helped us identify that Eric was shooting high in the early part of the night (between 9 and 12). And correcting that led to...
• LOWER A1C. Within 3 months of starting Eric on his CGM, his A1c went from around 8% to around 7.5%. It was entirely due to having better control as a result of the insights we got into his blood sugars at night.
• Increased confidence for his caregivers was another result — Eric's daycare provider had been leery of giving him bolus doses before he ate if he was in the lower part of his range for fear of producing a low, but with the CGM in place, we were able to SHOW her what happened with his BGs, and that gave her the reassurance she needed to transition from bolusing after he ate to bolusing before he ate. Which also helped his a1c.
• Better night's sleep. I mentioned this above, but I'm mentioning it again because it made such a HUGE difference having the CGM, simply in regard to my peace of mind. I never allowed myself to get into a deep slumber in the two years prior out of fear that Eric would have overnight blood sugar swings. Just knowing that the CGM was present changed my mindset enough to allow me to sleep. That first night wasn't so great, but about a week into it, I had the first real full night's sleep I'd had in over two years. It was heaven.
Now, keep in mind, Eric was two years younger than your daughter when he started on the CGM. If the additional device didn't bother him, it probably won't bother her. And while I see that it bothers her father, it's not her father who has to wear it, is it? If your daughter is okay with it, then her father should just accept it.
Not to mention: if you are doing most of the work (and living with most of the stress) of managing her BG levels, especially at night, then he REALLY needs to back off. Because it will not only help her (by helping you reduce her a1c), it will help you (by reducing your stress load and potentially improving your sleep). That being the case, he should not stand in the way out of whatever personal distaste he has for mechanical aids—because if your daughter has no issues, and it will help both you and her, then he's being obstructionist over something that could provide significant benefits to health & well being for you both. And that's just plain selfish.
Bottom line: if he TRULY agrees that it's in her best interest, then as her father, he needs to get over whatever it is that bothers him about it and let it happen. And if he can't, he should talk to a therapist about it because he has some deeper issue around control that he needs to work through.
I will add one more "pro" — even though we don't use the CGM anymore because of the problem Eric had with the sensors, just knowing his nighttime pattern of BG that rises starting at around 8 PM and stabilizing at around midnight is enough that I can manage his overnight BG and still sleep well. He has an a1c of 7.3% as of his last endo visit, lowest it's ever been, and it is almost entirely due to having awareness of when I can get away with jacking up his basal and when I can't. Even a year after ending his CGM therapy, that little device is still helping me.
aimeeh2oski, to answer your other questions -
1) Yes, I do find the G4 to be an improvement in accuracy but moreso in range (which is fabulous) and stability/lack of weirdo events like the dreaded ???. I also find it takes significantly less time to get a new sensor oriented and giving accurate readings.
2) Yes, in all honesty, we do bolus from it. However, we only do this in select situations. For example, a small adjustment correction, or bolusing a snack when we tested BG recently and the Dex is showing that she's flat (stable). We have certain "best practices" guidelines that we always follow in order to try to shut out unexpected accuracy errors - for example, we test whenever we're doubled-down (dropping very fast), whenever her BG crosses a certain low threshold, whenever we have a new sensor and it's reporting a skyrocketing high (usually false), etc. I have been in a couple of situations where I found myself without test strips/a tester and used the Dexcom to guide me.
3) The learning curve is not insignificant. It's an adjustment to get used to a new inflow of constant data and it definitely takes time to learn what to do with that data. You get better and better at learning when to react to things and how much. Also, the Dex data will help you to hone your pump settings and boluses, producing more stable BG on the whole, which in turn leads to less excursions that you need to react to.
Adding to what was said above regarding overnight - the Dex alarms can definitely wake you up a lot more when you are having a bad BG night. On the other hand, once we get our new basals nailed down (or whatever is going on) we see nights of almost perfectly flat BG that may never alarm at all - a great night's sleep.
In the end, it is just a lot more information about what's really going on. After using the Dexcom, dealing with diabetes without it literally feels like I'm blind. It is just so different. What you do with that information varies by parent/family, in my experience. But by way of encouragement, we have taken Ainsley's A1C down to 6.1 with it. So a lot is possible.
Amazing detail, Elizabeth (my daughter's name, BTW). Thanks so much for taking the time to spell it all out for me. That's too bad about Eric's allergy to the sensor wire.
As for my husband, yes he has deeper issues - as in 19 months post-diagnosis, he still hasn't fully accepted the fact that Liz has diabetes, which is why this is so hard on him - it's just another reminder. That's why I posed the pros and cons question - so I could show him proof that she needs this - from parents who are in the same situation.
My son has been on every CGM I think. The first Minimed was awful, so innacurate, and uncomfortable (painful), gave up on it after a huge fight with insurance to get it. Next he had the first generation Dex, not very accurate, and still uncomfortable. He abandoned that after a short time. Finally talked him into trying the new Dex, he loves it! He doesn't want to be without it! It is so much more accurate it's shocking! Most finger sticks are dead on with the Dex. He doesn't want to be without it, he panics if one times out or the receiver needs charging. The CDE even asked him why he does so many finger sticks with the DEX, just old habits I guess. They always used to say, don't treat based on CGM values, they don't say that any more with the new DEX, it's that accuarate. It's very small, I don't think she will mind wearing another device. The transmitter is small, and the receiver is small. No question, you are better off with the Dex than without!
That's awesome that your son loves the new Dex that much! So encouraging! How old is he?
So just a few more questions: where do your kids wear the sensor? (My daughter wears her pods on her arms and legs) Do they have any reaction to the adhesive? How long do you generally get out of each sensor - esp if they're in the water a lot?