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How useful is a cgm?

Discussion in 'Parents of Children with Type 1' started by Lakeman, Jan 11, 2011.

  1. Lakeman

    Lakeman Approved members

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    Just got back from the 3 month clinic visit and our daughters a1c was 7.1! My wife cried tears of joy. Anyway that is not the purpose of this post - I too just had to share our joy.:):)

    I asked about getting a cgm while we were there. I thought I might have to fight to get am authorization for it. But the nurse said, instead, that they are just not that great. That they do help but are not very accurate and do not replace checking with a meter for giving doses. But I trust you all much more. So my question is how valuable are they as part of a treatment plan? What are the pros and cons?

    Also she said that only about ten percent of their patients use a pump. the impression I get here is that a much higher percentage of people use a pump. So what do you think?
     
  2. Lovemyboys

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    I think a cgm is very beneficial! That said, I'm not sure it decreases the number of finger sticks, but it does give useful information. I can track what causes spikes, what doesn't, how long I need to prebolus, when I need to up the basal after eating a high fat meal, etc. Which I couldn't do with just fingersticks. For example, I don't feel I have to treat a 90 (sometimes I will, sometimes I won't depending on the trend that it's showing).
     
  3. chbarnes

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    My 14 y/o recently said he couldn't imagine life without his Dexcom. Most of the time it is very accurate. With experience we have learned to recognize when it isn't. Even without any number the tracing alone is worth the cost of the product (and we pay OOP). the tracing let's you know what's about to happen. You can't get that from a meter. You can watch what happens to your child while they sleep, without poking them or waking them. Sports and exercise are way easier than with a meter alone. We actually do bolus from the Dexcom when it is accurate. Typically, Chris does about 2 fingersticks a day (this won't work for e everyone, but it does for us).
     
  4. timkris724

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    Whaaaaaat?? I love our CGM. It is not accurate 100% of the time but it is always accurate about how Will is trending. For instance he might not be quite as low as it says he is but he is heading that way and it lets me know. I would say during the 1st 7 days of a sensor we are within 10-15 points 85% of the time. That is assuming the blood meter is correct and the CGM is not.

    As long as it was not causing a financial hardship, like not covered by insurance and we could not afford it, I would never go without it. It is the future of diabetes management in my opinion.
     
  5. BrendaK

    BrendaK Neonatal Diabetes Registry

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    CGMS brought A1C down an entire percentage point. But more importantly than that, it has given my SON peace of mind and independence he hasn't had before. And oh yes, we sleep at night now....

    The nurse sounds like she was educated only with the first generation CGMS that weren't super accurate. The ones on the market now are very accurate! Our endo said diabetes is like a road trip, you can either drive with your eyes open (with CGMS) or shut (without CGMS). You may get to your destination with your eyes shut, but not nearly as safe and together as with them open!
     
  6. Flutterby

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    Honestly, if someone tried to take Kaylee's cgms, they'd have to pry it from my kung fu grip.. I wouldn't give it up for anything.. they aren't perfect but they are extremely useful, help prevent lows, we treat highs faster, and it gives us a more peace of mind at night.
     
  7. lakevictoria

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    Your endo needs to support you with these valuable tools. If your team is not up to date with all of this technology, then attempt to find another team. We've already switched as our first team put us in a diabetes box and we had to dance at their pace. You have NO idea what's happening between BG checks. A 120 is actually two different numbers. It's a 120 going up, or a 120 going down. You can't know that with just a finger prick. Go for it!

    P.S. Romans 8:28 has been my rock these past couple months!
     
  8. Lisa P.

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    Our endo told us, when we asked about the cgms, that for our small child:
    1. It would use valuable "real estate" that might be used for pump sites.
    2. I would never be able to entirely rely upon it so that if I ever took any actions or had any worries I'd be sticking her anyway.
    3. The accuracy just isn't there yet for little ones, when you calibrate their bg is moving so fast it's hard for the machine to figure it all out.
    4. We'd still be testing her a lot and we'd have no certainty from the cgms about any numbers.

    We got the dexcom anyway, he was happy to help us get it (I love our endo, he doesn't always have to "have his way"). He was absolutely right about everything on the list. I wouldn't live without it anyway. I'd give up the pump first.

    We have weeks where it is a frustration, I can never entire rely upon it because it is often quite wrong and occasionally extremely (300 points) wrong. But as one tool in the box, you put it together with the other stuff you know, and it can really make a huge difference. For example, if I think she's likely to go low because of questions about carb counts and the sensor has been pretty reliable, I can watch the arrows to see if she's moving down instead of sticking her four times in an hour waiting for the drop. It also catches lows sometimes when I don't see it coming, that in itself is invaluable.

    The CGMS is a very imperfect tool, just like manufactured insulins are very imperfect tools. Both are much better than nothing, though. Just don't expect it to do what it can't yet do and you should be fine.

    (Oh, for the record, we still test her probably 7 to 10 times a day, with an occasional day of 4 and too frequently a day with 15. But we used to test between 12 and 17 times every day. In itself, that's enough reason for our family).
     
  9. khannen

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    I was about to same something very similar. You would have to pry it from my fingers!! Lol It has totally changed the way we care for Shealyn. A1c dropped 1.2 in the first year we were using it. We've gone from the average of 10 fingersticks a day down to probably 4. She says she fees safer and 'better' on it and got upset when I once asked if she wanted to take a break from it. I can catch the lows before they are too low and correct the highs earlier and more aggressively. Therefore, she physically feels better.

    It also gives me peace of mind overnight knowing it will alarm if there is a problem and when she is away from me (at school, at a neighbor's house, etc) . love love love cgms!
     
  10. Melissata

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    I agree that CGM's are going to be the norm in a few years. I would certainly question a ped's endo that only had 10% of patients on pumps. Sounds to me like they are behind the times. Just telling their patients that would make them think twice. Even though we may be looking at paying out of pocket for sensors with our new insurance, we will make it happen somehow. That is how important it is to us, because Melissa does not feel her lows, and never wakes up to them at night without the CGM. Last week she made the mistake of putting her Dexcom receiver in her backpack and didn't hear it in the store. After we got home she heard it and tested. She was 30 and had been that low for a couple of hours! No symptoms at all. Most people don't have that problem, but there are many more reasons to use a CGM. Advanced warning of highs is also priceless. Instead of finding out hours later, you can start fighting to get it down.
     
  11. suz

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    Agree with everyone else. CGMs don't always mean less fingerpokes, they're not always accurate, it does take up more real estate (big factor in little bodies!) and can be expensive.

    BUT, we wouldn't be without it. The mere fact that we can look and see the trending arrows make it worth while. Add to that the fact that we can sleep at night and let Dex alert us to any highs/lows and it's totally invaluable!

    Kieran would tell you that I'm comfortable sending him to a friends house on a playdate and know that he'll be safe without my ever-vigilent eyes on him ;). My husband would say the CGM is more important than the pump.

    If you can get it on your insurance then go for it knowing there are limitations. Understand that and I'm sure you'll love it too :)
     
  12. 2type1s

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    Agreeing with everyone! Not always entirely accurate, but I'd say 90% of time, it is accurate within 20 points, and the arrows are ALWAYS accurate. You'd have to pry it from each hand (since both daughters have one!). Morgan's a1c dropped 1.5 points in 2 months and has stayed there. Zoe loves it for school because it's a lot less obvious to push a button than drag everything out and check her blood sugar in class!
     
  13. Tiff's mom

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    This is exactly what we were told by our endo when I mentioned CGMS.
    She also said that she doesn't see that much A1C improvement in kids ds's age (4 at the time).
    Since starting Cgms in the spring of last year our A1C went down to 6,6 from 7,1. I expect even better number when we go again in 2 weeks.
    It's not perfect but very-very close. I know what's going on with Ds's BG 24/7, I can make adjustments without waiting a week to try and see a pattern, I can correct a high as soon as i see it happening, I can prevent a bad low( almost ALL his lows are caught around 60). I can let him stay in the 90s all night long without worrying he'll drop too low, I can see when that fat spike is starting and so on. I think I can go on forever.
    As I said it's not perfect, i dread the time I have to put in a new sensor, I don't sleep almost all night when I do that because I have to wait for numbing cream to work, then make sure I do a good calibration, so the CGMS is accurate next day at school.
    I don't remember exactly, but in one of his posts Darrel compared not wearing CGMS to driving blindfolded, you kind of going but WHERE are going? That's how I feel without the CGMS.
    One little example from a couple of months ago: Before Ds goes on the bus the nurse checks him, his BG was 125, good number, but when I asked the nurse to look at the sensor it was 130 with two arrows down, so I asked her to give ds 3-4 gummies to be safe. When I got him off the bus 20 min later he was 95. I believe without those gummies he would have had a bad low on that bus with nobody to help him:(.
    So there, I truly believe that if you can get it you should definitely try it and see for yourself.
     
  14. 5kids4me

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    Thank you for starting this thread. Our endo feels the same way about cgms and we are weighing the Pro's and cons.
     
    Last edited: Jan 12, 2011
  15. thebestnest5

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    I am so thankful that we have CGM--even with it's problems. CGM is not perfect; but neither are our BG meters. We just accept meter inaccuracy--because there is no other choice.

    It's been more times than I can count that DD's CGM has alerted us to an erroneous meter BG. We always think it has to be CGM that is wrong--but that's not the case.

    Trending for basals, overnight, at friends' houses, sick days, hormones, growth spurts--CGM is great!

    My DD loves her CGM when it's working well--she would not give it up. When it's not working well--she hates it. I feel that same way.
     
    Last edited: Jan 12, 2011
  16. Cassidi's mom

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    How does a CGM work?
     
  17. lisanc

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    We love our CGM!! Yes, it has helped lower our A1C ... and it has reduced fingersticks ... but most importantly it is our safety belt.

    Many times, when we have least expected it we have seen a potential low at night that we caught in the 70s that otherwise would have potentially gone much lower. Makes me wonder what we missed before we got it. Also our Endo likes the fact that she can achieve a great A1C with minimal lows because we can catch it. Finally, it makes both my daughter and I feel safer when she is at school.
     
  18. Lakeman

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    Can you please tell us more about what the cgm looks like, how large is it, where does it go, etc.?

    What is the sensor like? Is it a needle or a plastic tube or what? Does it hurt to insert it, is that why you use the creme?

    What is the procedure to calibrate it?

    Do you use the data to give shots? Is the data kept on a computer or does it disappear?

    Does it give alerts? Is there a remote speaker so you can hear the alerts from your bedroom?

    Anything else you think we would want to know?

    Thanks again.
     
  19. tammyjoa

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    can someone tell me what a cgm and a a1c and all those other number letter combos are.. i read and read and only understand half of what i am reading.. we are new at this dd dx 12-13-2010 9 years old...
    still learning mom.
     
  20. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Here's a link from the main CWD page to help http://www.childrenwithdiabetes.com/dictionary/
     

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