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CGM for little ones?

Discussion in 'Parents of Children with Type 1' started by mamateach, Jan 30, 2012.

  1. mamateach

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    Hello!
    We have been considering a cgm for our daughter, Lily, who was diagnosed at 11 months in April. She is now 20 months and, while her blood sugar is fairly well controlled, she is not able to tell us if she feels high or low and of course we worry about her at night. She is currently using the Animas Ping. I just have a few questions for people who have put their very young children on a cgm.

    1. Where do you put the sensor? She is so skinny (23 pounds) that we are only currently using her upper butt and the backs and sides of her thighs for her pump site.
    2. Where do they carry the receiver? Again, she is tiny and the pump, even in a Spibelt, is very bulky. I can't imagine making her carry something else. Is the receiver something that I could carry in a diaper bag or keep near her in the room?
    3. Once you started your child on a cgm, did you see a significant difference in what you thought his/her blood sugar was (using finger sticks only) and what it actually was (using a cgm)?
    4. Did the cgm significantly alter the way you treated his/her diabetes?
    5. Did the cgm give you a feeling of reassurance that you did not have with finger sticks only?

    Sorry this was so long...just trying to get some feedback from those of you who have been there!
    Thanks so much!
    Jessica
     
  2. Christopher

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    I am sure the CGM experts will chime in with great comments but I am just wondering, instead of worrying about her at night, why not just check her bg?
     
  3. mamateach

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    Night Checks

    We do check at least every 2-3 hours through the night. We check 10 to 12 times a day. This does not mean that I don't still worry about what is happening between checks, especially at night and during naps.
    Thanks,
    Jessica
     
  4. Christopher

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    If you are checking that often, then I would think that you are going to catch most highs/lows before they become problematic, so try not to worry. But I do understand the worry and hope you can find a good solution. It must be very hard when they can't tell you how they feel.
     
  5. hawkeyegirl

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    Hi Jessica!

    My son was older (3) when we started the CGM, but I'll tell you about our experience. We use his tummy for pump sites and bottom for sensors. We've been doing that for 4 years now, and haven't run out of real estate yet. I'm very careful about rotating sites so that we don't over use any area.

    We have the MM pump, so our CGM readings appear on his pump screen. He doesn't have to carry a separate receiver. I do, however, have my own receiver for his CGM that just lays on the kitchen counter or goes with me in my purse. With a child that young, they definitely do not have to carry the receiver themselves, in my experience.

    Do we see things that we would have no idea were happening without the CGM? Oh, lordy yes. It's illuminating and terrifying what happens during times you would never think to check.

    Did the CGM significantly alter the way we deal with diabetes? Absolutely. We can catch highs and lows before they happen (not all of them, of course, but most), and are no longer blindsided by a 400 or a 40 when we thought everything was humming along fine. I could write a book about how differently we manage him because of the CGM, but it would be boring and long. :)

    Does the CGM give us a feeling of reassurance that we do not get with fingersticks alone? Yes. A thousand times yes. He wears it 24/7, and it is non-negotiable at this point. It is as necessary to me as a seat belt in the car. It has allowed me to actually sleep at night, knowing it will alarm if he goes high or low. The technology is not perfect, but it's pretty great overall.

    Let me know if you have any more questions.
     
  6. lisac

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    Hadlee is 4 and we just started cgm about 4 months ago. However, I feel like I can answer some of your questions at least from my perspective.

    1. We put sensors in her arms, belly, or butt. You cannot put the sensor right next to the pump site, but you could have 1 in each "cheek" and then make sure you move them around.

    2. Hadlee has a pump pack, however, we rarely put her reciever in there anymore. We feel like it's just too much for her to pack around all of the time. When we're at home, we just try to keep it in the same room as her. When we're out, I carry it in my purse.

    3. We didn't really have any suprises in blood sugars. Hadlee's numbers were (and still are) terrible. It's SO helpful to see trends. I have been able to change her IOB settings by paying attention to when her bg starts to rise (we had it set at 4.5 hrs and now we're down to 3 hrs.) Also, I was able to PERFECT her overnight basal rates because of her cgm.

    4. It did change the way we treated her diabetes. Now we can see that 89 is a steady 89, not an 89 and dropping. My husband is terrified of lows, and anytime she number got near 100, he would give her something to bring her up because her was afraid she would drop lower. Now he knows her bg is stable and will let it ride. Also, if she is getting high and she has double aroows up, we won't just bolus that bg, but we'll also run a temp basal to bring her down before she gets too high.

    5. YES!!! The cgm gave us SO much reassurance for the reasons listed above.

    Hope this helps. We were lucky that our endo was very supportive of cgm for our daughter even tho she is young. I have read studies that say it's not worth it for this age, but I think it totally is.
     
  7. emm142

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    I'm not a little kid and I started CGMing at like.. 16? But I just wanted to say, my first night on the CGM I tested at 34. If the CGM hadn't alerted me, I wouldn't have tested for another couple of hours. At that point, I suspected CGM was medically necessary for me. As time went on, that only became more apparent.
     
  8. Flutterby

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    My daughter has been using the cgms since she was 4. Like Karla's son her pump and cgms are built in so she only carries one device. We do pump sites on her belly, tush, and back of her upper arm. We do sensors exclusively on her upper outter arm, and we NEVER have the pump and cgms in the same arm at the same time. We change the cgms every 7 days (every sunday) rotating arms so that each arm has a full week before being used again. As for pump sites we rotate best we can, belly, belly, arm, arm, and then we throw the tush in there once in a while (its her least favorite place for a pump set) to just give some extra days between sites.
     
  9. PixieStix

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    Ditto to everything said by the others. My DS has worn a CGM 24/7 for 5+ years now, can't imagine going w/o it. Paid cash OOP for years before our insurance finally started covering it. Without the CGM I would be checking same as you, really only way to stay safe IMO. But every BG check is a snapshot at that moment...a lot can and does happen between checks. What I love most about a CGM is you never hold your breath and wait for the number to pop in the meter--you already pretty much know where the BG is and if it is going up/down/staying steady and can take action before small concerns become big problems. Did it change how we treat diabetes? Well, it does allow for more aggressive and tight control with more reassurance than w/o it it. We also have only had the MM pump/CGM so nothing extra to carry around. Site management is really crucial, always healing a spot or two while rotating infusion sets/sensors to as many areas as possible so we use arms, legs, belly, butt, hips at different times. CGM can definitely work for the littlest ones, I'd look into it if it is feasible for your family.
     
  10. fiaz

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    Thanks so much for the responses! I had very similar questions regarding my 25 month old. We test eight times a day and are still not comfortable about the "non-test" times. So, a CGM makes sense for us.

    We are also making a pump decision around this time. We like the Animas because of the remote delivery option but we like the Minimed for the integrated CGM. Not sure what to do!
     
  11. Flutterby

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    For us the intergrated cmgs out weighs the remote. I didn't want her having to carry around another device. But others find the remove more important, its all about what will work best for your family. There is no wrong answer, both are great pumps.
     
  12. mamateach

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    CGM receiver

    For those of you who said your child does not carry around the receiver...how does that work? If it goes out of range, do you have to reset it? Will it show readings during the time that it was out of range? What is the actual range on the receiver?
    Thanks again!
    Jessica
     
  13. Flutterby

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    For my daughter, the receiver is her insulin pump. It reads right to the face of her pump. When we download we just down load her pump, all info is right there. :cwds:
     
  14. BittysMom

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    Can someone help me clear up my confusion on this- If you have the MM, you don't *have* to use the parent receiever, you can just use the pump to look at the cgm info? So kids don't have to take the receiver to school, it's just an extra way for a parent to look at the cgm?

    or am I wrong?

    Also, how does the cgm make life at school for littler ones? I'm thinking it's extra security, but more work/time consuming? Thanks. (and I'm sorry if I'm dragging this off subject at all)
     
  15. hawkeyegirl

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    Yes, that's correct. Jack doesn't take the Guardian unit to school.

    The CGM is great at school, because it catches highs and lows before they are severe. The Medtronic CGM has predictive high and low alarms. We have ours set to alarm 20 minutes before it predicts a low will occur. For us, it has cut down on unnecessary checks, because if it doesn't alarm, we are reasonably sure all is good. It doesn't cause any extra work for the nurse. She loves it!
     
  16. BittysMom

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    Thanks for clearing that up. :)
     
  17. Garrett's Mom

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    Our son was diagnosed at 15 months and started using the Navigator at 18 months. It was really life changing for us in how we could manage his blood sugar. We are probably one of the last Navigator users standing as it unfortunately has been taken off the market in the United States. He is also very slim so we use his bottom for infusion sites and his arm for sensors. I have always carried the receiver in my purse or in my pocket. If he gets too far away from me it is easy to reconnect. At preschool, the teacher keeps the receiver with her and at home it sits on the counter. There is definitely a learning curve but it is so helpful and I really can't imagine life without a CGM now.
     
  18. MomofSweetOne

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    You don't have to have the parent receiver, but it's handy....unless you want to fork out the $$$$$$$ for the MySentry. The pump can't be heard from under multiple blankets during the winter, and without the CGM in a bowl of pennies on the bedside stand, the CGM would be worthless at night.

    It is handy to use the receiver with working within 6 feet of the kids; you don't have to keep asking BGs all the time!

    I believe Darryl has said they send their old receivers swimming with Leah so that she's monitored even then. :p Ours is still new, but I'd like to do that, too!
     
  19. BittysMom

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    Good to know. I'm not sure what we'll wind up doing at this point but any info help. Thanks!
     
  20. MomofSweetOne

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    We also like the separate CGM receiver on car trips. Trying to access the pump is problematic when buckled in(and boy, is tubing adept at wrapping itself around seatbelts). I prop it up in the center console where we can see it and keep an eye on what's happening in her body, even and especially if she falls asleep.
     

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