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Can We Say CGMS?

Discussion in 'Parents of Children with Type 1' started by DListMom, Apr 27, 2009.

  1. DListMom

    DListMom Approved members

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    Just wanted to gather some thoughts from CGMS system users. My daughter's endo expressed her thoughts on the CGMS system and said it's actually a bit more painful than the pump insertion and could be uncomfortable at times. How accurate is it? Is it worth it? Always, thanks for your input.
     
  2. betty6333

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    I would assume it is more painful, but we use ELMA so my son has never felt it.

    Accuracy is relative, and I have found differs from person to person. For us though it is amazingly accurate. We have loved it so far.

    For us it has been worth every penny, and more. I can't imagine trying to figure out diabetes for my son without it... And I am NOT exaggerating, I am 100% serious.
     
  3. Flutterby

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    the insertion needle is definitely bigger.. we use EMLA (a numbing cream) and Kaylee feels nothing.. there is a definite learning curve to it (more so than a pump)... whatever issues we've had with it have definitely been worth using it.. the information that we get is unbelievable.. Kaylee never complains about it..
     
  4. Kalebsmom

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    Kaleb's endo does not feel they are accurate enough at this time to have him get one. However, she loves the idea of it and says they are working very hard to make them better. She said when they do get more reliable she will recommend that all the kids get one.

    I think this is a case by case issue.

    If Kaleb was not able to feel his lows, like a lot of smaller kids can't, I would still take the chance and get one anyway.
     
  5. Mom264

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    Wow! uhh, I guess I would ask the endo if she's ever worn one and exactly how did it compare to the site insertion? Did she say anything positive?:rolleyes:

    I wore the MM sensor for 3 days (Two days attached to the pump filled with saline). With ice and the inserter--it was fast and did not hurt me.

    There is a small wire inside the cannula, so that is a little different from the teflon infusion sets.
    DD has said that sometimes if she turns the wrong way while sleeping she can feel a pinch, so she adjusts her position. Maybe that is the wire.

    Accuracy: Sometimes it is spot on and sometimes it goes off-- that's why you calibrate it several times each day. The sensors are really best used as a trending tool for now, you still have to check BG when it is time to bolus for a correction or a meal which involves a correction. But I believe they will only get more accurate as time progresses. For us, it allows me to see how specific food impacts blood glucose and that is fantastic.

    CGMS has been compared to the first insulin pumps, which could deliver insulin basal and the bolus, but didn't do any of the calculations (like doing MDI). Pumps have improved tremendously in the last decade, experts think that CGMS will just keep getting better.

    We think it is worth it!
     
  6. malyssa

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    I actually find the insertion of the cgms sensor way less painful than putting in an infusion set. But that is also my opinion, and I guess it all depends on the person and what cgms you are using. Also, I find the cgm to be quite accurate. Sometimes numbers go wonky, but it's expected, they're not perfect.

    The cgm helps so much in spotting trends and figuring out how long it takes before your insulin starts working, etc. It is amazing in my opinion, and after a few weeks with the Dexcom, I can't imagine life without it. It has really changed me, and made me more confident in my everyday activities. I'm not afraid to go to bed with a bg of 92 now. I did last night as a matter of fact, and woke up at 111. :) I'm not afraid to work out without eating first, and overall, the cgm had just changed the way I behave- my mom said to me in the car today (and this is her exact quote) "You seem much happier now, and you are in a much better mood. Malyssa, you have your freedom back." And I agree. I am happier, and I feel free from wondering what my bg is all the time...I feel like I have my freedom back for sure, and I really love my Dex. :)

    Sorry for the length and rambling. :eek:
    Just a 18 year olds perspective on the cgm. :cwds:
     
  7. Darryl

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    Unfortunately, Kaleb's endo, like many endos, is wrong. There are some kids (particularly
    those who engage in strenuous sports) for whom CGM's don't work well, but otherwise they
    work like a charm. If the endo came to the conclusion on a case-by-case basis, she might be
    right, but to make a blanket statement that they are not accurate or reliable is simply ignornant.
    It is unfortunate that she (and many other uninformed endo's) are denying childrne the
    opportunity to try this amazing device.

    Back to the OP's question...

    CGM's are very accurate where it matters most. BG checks are possibly more accurate when
    considering a single BG point, such as "BG is 120 at this moment". However, BG checks are
    practically useless in managing diabetes (despite the popular opinion to the contrary by many
    endo's). The problem with BG checks is as simple as this: Let's say BG is 120. Is that 120 going
    up? Or 120 going down? Or 120 stable? In the first case you'd give insulin. In the second case,
    you'd give carbs. In the third case, you'd do nothing. In other words, BG testing is a crap shoot
    with a 33% chance of being right. That is why people who rely on BG tests to manage diabetes
    are often frustrated with how unpredictable diabetes can be.

    A CGM is usually within 10 to 15 points of the actual BG, and every now an then it is off 30 or
    40 points. That is no matter. The important thing is, you know at all times if BG is rising or falling
    or stable, and therefore, you make the right decision nearly every time - at least correcting in the
    right direction makes all the difference in the world, even if the amount of the correction is not
    perfect.

    Even at those unusual time when my daughter's CGM is off by 30 points, what is the consequence?
    If the CGM says 100 and her BG is really 70, she'll feel a little low. If the CGM says 100 and she's
    really 130, it's no big deal.

    Before the CGM, we'd get very accurate BG readings of 50 or 380 all the time, and bad hypos. Since
    having the CGM, she rarely has hypo's that we don't catch before they are symptomatic. Her highest
    BG (either on the CGM on on the BG meters in more than 2 years) is 279, and that was only once. By
    knowing when BG is heading up past 180, we can treat it aggressively and stop the rise and bring it
    down, with the security of watching the BG drop on the CGM and knowing when enough insulin has
    been given. We've maintained an A1C of 5.6% (expecting 5.5% at the next check based on her
    most recent BG average) very few mild hypo's each month, for more than 2 years straight. It's all
    because of the CGM. Before the CGM, control was terrible. If the CGM was "not accurate enough"
    then how did we achieve such a consistent improvement?

    The truth of the matter is (with the exception of a small percentage of individuals whose physiology
    does not work with the CGM sensors), the CGM is leaps and bounds more accurate than any BG meter,
    because the data includes the polarity (rising or falling) associated with the BG number.

    Check out the poll of CWD members and their experience with the CGM here...
    http://forums.childrenwithdiabetes.com/showthread.php?t=22047
     
    Last edited: Apr 28, 2009
  8. Mom264

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    Thanks for posting this. It is what I hope my dd will experience when she is a teen.
     
  9. Darryl

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    Not rambling at all... very well said.

    Shame on any endo who does not yet know that this is reality, and that CGM's are a medical necessity for any child with T1D.

    PS. Malyssa, your outlook makes me feel great about how my daughter will be doing 7 years from now!
     
  10. Connie(BC)Type 1

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    I don't find it more painful, and I'm a HUGE wimp, in fact 9 out of 10 times I don't feel it. I don't use emla either. Would if it were painful, trust me!
     
  11. Snowbound

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    Our son found it very painful (we use the medtronic) but that may have been my technique. :cwds:

    I found it difficult removing the needle the first couple of times which compounded the problem. I started using the emla cream so he doesn't feel a thing now.

    We had some issues with rashes under the transmitter the first couple of times but now we put a small piece of tegaderm on his skin under the sensor, a technique I learned on this forum.

    We've been very pleased with it. As others pointed out it's not as accurate as the BG test and it's about 20 minutes behind, but it's still an invaluable tool. It's great to be able to see his number at any time to get an idea what's going on.

    For example, he was at track and field yesterday. Toward the end he saw that his number was 4.9 (88) and dropping so he stopped and had a snack. He tested and was actually 3.5, which is what we'd expect with the CGM being a little behind.
     
  12. selketine

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    William has only been using the Navigator for a few weeks but it is definitely a plus and not a minus. There is a learning curve - I can't deny that!

    It has caught lows I would have never guessed were happening - and we test him probably as much as any kid on this board was tested (before CGMS). We tested the heck out of him (cause he doesn't recognize his lows and is so variable). It also caught a sudden blood sugar spike that seemed to be related to a failed set - we nipped that in the bud quickly with no bad effects. And last night it was very helpful when he had an asthma attack and his bgl went through the roof - with the darn thing alarming every hour it certainly gets your attention. I was giving him so much insulin - I'd have been more afraid to do that without the cgms.

    I don't know if we've had an unusually eventful month or what since getting it but it has definitely helped us catch seriously out of range numbers but letting us run him lower generally when we feel it is working well.

    As I said - there is a learning curve - we're still figuring out a lot of things. The Nav also doesn't have the issue of the huge inserter needle going in sideways - which frankly creeps me out and I'm not squeamish at all. There are rumours out about the future of the Nav and many unhappy people waiting for replacement transmitters - but when it works it is wonderful. I think any cgms system has its positives and negatives but is overall worth it.
     
  13. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Carson wears the Navigator and it's definitely way LESS painful than the site insertions (Inset 30's)

    As far as your endo doubting it's accuracy, I think that's bogus. Maybe she hasn't seen the new generation of CGMS. They were rather inaccurate when they first came out, but Carson's is within 5-10 points of his blood sugar 99% of the time. Often it is exactly the same as the CGMS.
     
  14. hawkeyegirl

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    I roll my eyes at endos saying that they're not accurate enough yet. I was just at the CWD Focus on Technology in Chicago, and the Faculty there could not say enough good things about the CGMS. Dr. Bruce Buckingham (working on the artificial pancreas project), Gary Scheiner (who wrote Think Like a Pancreas), etc., they all love CGMS and prescribe it regularly for their young patients. Of course they're willing to put in the time and effort to make sure that their patients have success with the CGMS, whereas a lot of endos are not.

    I cannot say enough good about CGMS. We had to go without it 2 days recently when I reordered late and it sucked. SUCKED! I don't plan to ever make that mistake again.
     
  15. ecs1516

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    We get our trial on Dexcom on Friday. I'm excited! I hope we have as good as results as you do.

    On answering the question does the CGM hurt more. It depends on which CGM you are on. My kids say the Navigator hurts more that pump insertion but the CGM has a big inserter needle.
     
  16. malyssa

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    Oh, you are very welcome. I am sure that your DD will turn out to be a fine teen!

    Thank you. I am sure that your daughter will turn out to be a fine teen as well!






    ***All of the parents here are so great and the support that you all give to your children is amazing. And the diligence that I see you guys put forth when there is a problem, or when your child's bg's are high/low amazes me. It's like all of the parents here are CDE's. And honestly, I'd trust all of you before most people in the D field most of the time. So thank you, and just keep up the great work with all of your children...with parents like all of you, you really have no need to worry. You are all amazing. :cwds:***
     
  17. DListMom

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    Thank you for responding to our CGMS question!

    OMG! I am just grateful to all of you beyond words! My DD and I will be going for our 2nd try (insulin pump) next week and we're hoping it goes well this time, and from your responses, we will definitely consider CGMS :) I recently posted a blog regarding our first try with the insulin pump and of course at that time (8 years ago) CGMS was not available, but the outcome of the pump training wasn't desirable. You may also read my blog at:
    http://www.mylifeonadlist.com/wordpress.
    Again, I really appreciate all your input! They're very valuable to us :)
     
  18. iluvmhp

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    Malyssa - YOU ROCK!!!

    We are so fortunate to have you here on the CWD boards. Your insight is priceless. I appreciate you more than you know!
     
  19. Darryl

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    I just want to add that there is a thread in the teenagers forum full of
    teens who are raving about their CGM's and sharing information with
    each other. It's great to see how much interest they are taking in using
    CGM's to get control of their BG, their health, and their lives. Makes me
    feel very good about the company my daughter will have here a few
    years from now.
     
  20. malyssa

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    Thank you. I just love cwd, and I'm glad I can help!
    Again, thank you for your kind words. :)

    Yup, here's the link if you want to read our posts...it's about a couple of teens (including myself) first few days on CGMS. :)

    http://forums.childrenwithdiabetes.com/showthread.php?t=35302
     

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