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Pondering a CGM again...

Discussion in 'Parents of Children with Type 1' started by lil'Man'sMom, Jun 5, 2011.

  1. lil'Man'sMom

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    Mann and I have talked about a CGM, he even did a week trial last fall. It wasn't all that successful. He was stressed about the insertion, we used Elma which helped with that. He said it didn't hurt after it was done. Having a second site was a small issue but he said it wasn't so bad. His biggest issue was the alarms and the fact that we really couldn't get it to work correctly in such a short time frame.

    So now I want to revisit it, he is very leery about the whole process again. Do I moved forward with it (insurance and scripts) then see how it goes or should I wait. His last A1c was 6.8, he does feel lows once they happen but not the drop, he is very active it sports so we are never seeing the same thing day to day. One day he will run low, the next he is in range and the next can be high.

    Those who use the CGM; how do you utilize it? Is it worn always, if so why or why not?
     
  2. hawkeyegirl

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    It sounds like you know this, but a week's trial isn't nearly long enough to fully appreciate the CGM. If you have good insurance and the cost isn't an issue, I'd probably go ahead and order one.

    Jack has worn the CGM 24/7 since we got it, simply because we find it that invaluable. I'll try to list some ways in which we use it, but I'm not going to think of everything.

    1. Nights, nights, nights. Not only do I feel comfortable running him lower at nights than I did before, but it makes basal testing overnight a piece of cake. Every morning I review the CGM and just make little tweaks as needed. Nights are SO much better now.
    2. Corrections. You can SEE if a correction is working or not. No more waiting 3-4 hours. If he's still the same or going up at 1.5 hours, he gets another correction. And if I overcorrect as a result? The CGM will catch it.
    3. No surprise 300s or 40s. You catch those excursions much sooner, when they're much easier to deal with.
    4. "Problem" foods. You can see on the CGM when they go down, when they start to rise, how long the rise continues. You can see if your "up front" bolus wasn't enough, or if you need to start the extended dose now. It helps SO much with this.
    5. Activity. Jack had a birthday party today where they were mini-golfing in 90 degree heat. I bumped him up to 150 before the party, and every time the CGM drifted down more than 30 points, he got a tab. He ended the party (after pizza and cake) at 133, and I didn't do a single finger poke.
    6. Basal testing during the day. Once you have the CGM for a while, you'll get to know how the curve "should" look after a meal. And then when it starts looking funky after a meal, you can spot where you need a basal (or bolus) adjustment. We don't do fasting basal tests anymore, because you can see on the CGM where basal adjustment is needed without them.
    7. Independence. Jack is younger than Manning and does none of his own care. With the CGM, he can go play at the neighbor's house two doors up and knows that he needs to run back home if he alarms. If we didn't have the CGM, I'd have to be running up there checking him all the time, but with it, he can have some age-appropriate freedom.
    8. The directional arrows. Even when the CGM is a bit off, the trend is ALWAYS right for us. We treat a 200 much differently if it is 200 heading up fast, 200 heading down fast, or 200 holding steady. Same with an 80.

    I know there's more, but that's just off the top of my head. Yes, it is one more layer of work on top of everything else. But after a while, it just becomes part of the routine. If the alarms bother Manning, turn the high ones off at first, or set the alarms to vibrate. We don't use all the alarms. High alarms are off at school (since he gets checked often enough there to catch a disaster, and they were really annoying him). We don't use the rate of change alarms at all, and don't use high predicted at home or at school. So basically, we use, predicted low and low, and high (at home). We set the alarms tighter at night (80/140) than during the day (85/165).

    So yes. We are obviously firm believers in the CGM. With an older child, it can be tough getting them to "buy in", I know. But there are situations where it will make Manning's life easier. He just has to wear it long enough to experience them. :)
     
  3. Tigerlilly's mom

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    Our boys are very similiar:cwds: When Tyler used the CGM for 6 month as part of a trial I heard the words "I hate diabetes" for the first time:(.

    To Tyler wearing the CGM, dealing with alarms, calibrations, insertions etc., just made diabetes too much in his face. He found managing his diabetes too big of a chore when he was wearing the cgm (even though it was incorporated into his MM pump)

    I, of course loved seeing what happened to his bg during sports practices and games....it's amazing to see how adrenaline effects his bgs, which only happens during games and not practices. So I did get good information on how to prepare for games as opposed to practices. (for example -absolutely NO gatorade duirng games!!!)

    If we were to go try the CGM again, I don't think it would be on a fulltime basis, more of a "help figure out those wonky numbers tool". I also believe that there would be monetary bribing to get Tyler to deal with it again.

    Tyler also feels his lows and caught his bg going down before the CGM did - which took away my feeling of the CGM being a safety net.

    Sorry for my Negative Nelly post:eek:
     
    Last edited: Jun 6, 2011
  4. Lee

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    I hate to say it, but the alarms are why Coco hate's the CGMS. That, and the site irritates her to no end. I wish I had good advice, but I am looking for tips because it would be EASIER to pull teeth then to get her to wear her CGMS.
     
  5. JeremysDad

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    Jeremy was not too keen about having to wear another device and carry something else in his pocket until he was MADE to trial the CGM by his Endo because of his lousy A1c (11.3). Once he started wearing it, he saw the value, not only in what it can tell him but also the fact that he does not need fingersticks as often. He likes the trends to see where he is going. He wears it 24/7 and the receiver is with him about 90% of the day.

    Doing BG checks was always an issue with Jeremy so now unless he feels low, he does a BG check twice a day to calibrate the Dexcom and that's it. To him, that's worth the cost of wearing the CGM.
     
  6. kimmcannally

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    J loves his Dex - he is constantly checking it to see what his BG is. I love being able to see how his food bolus is working (we have finally NAILED pizza!) without constant testing.
    He now wears his receiver 100% of the time. I finally had a brainstorm and put velcro on the back of it and on the belly band he wears. His pump and Dex are both velcro'd to him now and it works wonderfully!
    (He has been wearing the sensor 24/7 since he got it but was getting worse and worse about leaving the receiver laying around)
     
  7. lil'Man'sMom

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    Thanks for listing all the reasons. I think #1-5 are huge incentives.
     
  8. lil'Man'sMom

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    "made diabetes too much in his face", I believe this is how Manning is feeling about the whole CGM process.
     
  9. lil'Man'sMom

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    I am a firm believer in the parent making the medical decisions. I also have raised teenagers, and even though Manning will only be 10 this weekend he is on his way to those turbulent years. I don't want to have him feel he has no say and rebel, especially where diabetes is concerned.

    I am going to actually let him read the responses, pro and con then go from there.
     
  10. Flutterby

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    I think Karla summed everything up nicely, and to save me time typing and repeating her, I'm just going to say, I 100% agree with her. We have better care because of the cgms, and Kaylee definitely has more freedom because of it.
     
  11. Ali

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    FWIW
    You can use a CGM so your child has to deal with alarms rarely. Work with your Endo to set alarms at very high and very low settings so they truly only hear in an emergency. You can then use the downloaded data to work on setting basal and ratios over time. Better settings and a sense of exercise and daily/weekly/weekend patterns will get average numbers much better and a "truly" low low alarm will not alert very often but will help keep them safe from a coma. Just a thought.:cwds:ali
     
  12. emm142

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    I use my CGM whenever I have sensors or can afford to buy them. It has made all the difference in my D management, for all the reasons Karla mentioned. It also just makes me safe. Before I got the CGM I didn't realise that I was just a little on edge all the time because I knew I was hypo unaware. Now I have the CGM I feel safe that it would alert me in time that I could treat a low, and that is priceless. :)
     
  13. dejahthoris

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    Sounds like something to think about.... thanks for sharing.
     
  14. tiger7lady

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    Thank you for the list! I've been taking notes for a little while so that I can convince the endo. Last time I brought it up he said that almost all of his patients end up putting it on the shelf and not using it so he really didn't feel it was necessary.
     

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