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For those that are not using CGM...

Discussion in 'Parents of Children with Type 1' started by HannahB, Sep 2, 2007.

  1. WestinsMom

    WestinsMom Approved members

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    I think that is probably what would happen. I know that before we tried it, that was my plan. But after you have that to rely on, it is hard to adjust to not having it on. I can't wait for insurance to pay! I think billing codes will help. (Let's cross our fingers!)
     
  2. Momof4gr8kids

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    We tried one through our doctors office. My daughter doesn't like having the second set, and second unit, and for the week we did try it, it was never even close. For us the tech that is there just isn't worth it. Now I know I could get rid of the second unit (not site, just monitor) by going with MM, but I don't think MM has kept up with their pump enough. We use the animas, and I really love the smaller basal rates, and we really do get a lot of use out of being able to change basal by .025. My daughter's basal rates are barely enough for .025 to be 10%. So to go with what I see a lesser pump (IMO) for a tech that didn't work well for us, just isn't worth it for us right now. As future tech comes out we will look at it again.
     
  3. sammysmom

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    We did clinical trials with all of the CGMS and in the end, my son felt like a robot. We test often enough to get the info that we need and quite frankly, we were bugging him with always wanting to look at what his bg was doing! It also becomes harder as they get older. As a toddler it would have been great, toddlers do not have that much say in decisions and kind of go with the flow. My son is now 6 and he has enough kids comment on his pump, he does not want or need any more comments than necessary. So in the end, even after trying ALL cgms, we decided against it...I do not want to overload my son with "equipment", he is only 6.

    shannon
     
  4. Carrie

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    For me...getting the pump for our daughter was a major mental hurdle to get over. Don't get me wrong...I'm so glad we did it. The CGM is another "hurdle" for me. At this point, I'm just not ready to have one more thing attached to her little body. Our endo said that within two years, the one site will be able to do both jobs--pumping insulin and doing the job of the CGM. I'll be the first one in line for that.:D
     
  5. Beach bum

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    For us it is the same exact reason. Site overload/equipment overload. I don't want to burn her out, or become so resentful of her equipment that she hates D enough to not properly care for herself down the road. Our endo, while she thinks it's a great tool, is hesitant to give it to children in our practice who are in this age group. She feels that children can get the robot feeling. I know for Abby, she just wouldn't/couldn't tolerate another site. I sometimes feel embarassed to say we're not doing it, nor do we have the desire at this time. I just want to wait. We are lucky in the fact that we don't need it as much as some kids, but there definitely are times when we could have benifited from it. And of course, insurance is an issue when it comes to coverage.
     
  6. Ellen

    Ellen Senior Member

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    My son has not yet expressed a willingness to add yet another site insertion. I also understand that many will rely on the sensor information even though the instructions are to do a fingerstick confirmation prior to making an insulin dose decision. The temptation in a teen/young adult will be overwhelming to trust the sensor and not confirm. That said, I'm happy the technology is moving forward. I hope we'll have access to even more accurate sensors by the time my son expresses an interest in having one.

    At CWD FFL I saw a father who had inserted the MM sensor and wow was he bleeding. It was humbling to say the least.
     
  7. BrendaK

    BrendaK Neonatal Diabetes Registry

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    My mom had a Dexcom for about a month and really didn't like it at all. It just wasn't quite accurate enough for her. It would alarm all night long and say she was at 55 when she was really at 95. She is pretty stable all night, and 95 is a great number for her. But the darn thing wouldn't let her sleep at all. Not to mention she is a very tiny woman and the Dexcom was quite large and clunky -- she had a hard time wearing some of her clothes and figuring out where to put the Dexcom. It did catch a few lows she might not have caught so quickly, but the main problem was that it kept alarming at night when she was not low. My dad had just gotten a CPAP machine for sleep apnea and she had this Dexcom -- she felt like they were in a nursing home or something with all of the machines they had in their bed at night :rolleyes:
     
  8. Mom2Madi

    Mom2Madi Guest

    We have the Guardian and our insurance is awesome and covered all of it and the sites but my 10 year old is not interested in wearing it. We did it for about a month - getting about 6 days out of a site. My numbers were not as close as others (about 20-30 pts off many times) have stated but still good enough to see trends and to catch lows. I loved the thing - but she didn't like having the two sites. Said the CGMS one was itchy and uncomfortable at times and when on her stomach it wasnt comfortable when she bent over. She didn't like carrying the extra device around either (we pump with Animas). So we agreed on her wearing it one month on and two months off.
     
  9. selketine

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    I have to say I'm hoping too for a single site device for delivering insulin and getting the bgl. Yet there are days I'd probably sell my soul for some trend arrows!

    It is a huge step in the right direction - I wonder if the long awaited Navigator will address some of the drawbacks of the other two?
     
  10. miss_behave

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    Minimed has hinted that they are working on an all in one site for the CGMS and pump.
     
  11. WestinsMom

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    It is more than hinted...I have heard people in MM are wearing it. I think that comes with pros and cons. I don't want to change a sensor as often as I change a pump set. We will see how it goes when/if it comes.
     
  12. Flutterby

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    the ONLY reason we are not using a CGMS right now is insurance is standing in our way.. we should hear in the next few weeks on whether or not they'll be covering it.. we've made one appeal so far.. not holding out to much hope.. but still waiting.. we do have a way to purchase it if insurance doesn't come through..
     
  13. cadesmom

    cadesmom Approved members

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    We have a CGMS and used it for 3 months everyday, I spent hours learning the ins and outs of how this thing worked best.
    I was so disappointed, I thought it would make my life and Cades life better, It did just the opposite, There are alot of reasons I chose to put it away, but the #1 reason is the alarms that go off at night that you cant hear unless you sleep in the same bed, decided thats not helping him. The other is Cade does not like it any more and chose to a have a few more finger sticks. after using the CGMS his A1c was 7.4 thats better than before but just had another A1c without the CGMS and it was 6.9 thats with hitting at least 1 meter reading in the 60s a day if we were on the CGMS it might catch that, we are doing pretty good at catching anything lower than that.
     
  14. Adinsmom

    Adinsmom Approved members

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    If our Endo would prescribe both the cgm and the pump at the same time we would have probably picked the Medtronic over the Omnipod. Well we would have stayed with Medtronic instead of checking Omnipod out and... if Omnipod ever gets back with me so we can have a pump start...and our insurance is smiling in our direction. :rolleyes:

    Anyway our Endo cautioned me about cgm's. She feels a simultaneous start is info overload (which in our case I have to reluctantly agree). She sees the value and will not say no to anyone who wants it, but most of her patients have been disappointed and haven't stuck with it. She also informed us, the majority, if not all of her patients are paying out of pocket for the cgm.
     
    Last edited: Sep 4, 2007
  15. wilf

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    hey cadesmom, congrats on the A1C (6.9) which is great. If the "price" to be paid is a BG reading into the 60s every day that's not too bad. We're down in the 60s on a regular basis too.

    Just to give you a comparison - over in Germany, they don't consider you low until you're under 50!
     
  16. Twinklet

    Twinklet Approved members

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    For us, the reason is cost; For Emily, her reason is she doesn't want a 2nd site.

    However, her name just came up for a Navigator trial at Stanford, and she's leaning toward trying it. I hope she will stick with it, I'd love to have more information especially at night when she tends to be more erratic.

    Our camp counselor had a MM CGMS for a year and took it off a few months ago. She said she got tired of it and tired of seeing hundreds of numbers a day. I suppose I can see that side, too.
     
  17. EmmasMom

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    If your daughter has good control and is really bothered by the sensor maybe you could negotiate part-time use? Like maybe one week per month for basal/bolus adjustments. Has she said what it is she doesn't like? There may be ways to make it less intrusive by changing site locations, (the upper butt cheek is a great location and easy to hide under clothes) or adjusting alarms settings so she doesn't feel like she's messing with it all the time, (you can still use the data, even if you don't use the alarms all of the time).
    If the sensor has had a big impact on her control I think it's worth fighting for! I don't know how long she's had it, but in my experience it gets easier and less intrusive in time. It does change the way you manage your diabetes, so there is a definite adjustment period, but it shouldn't make daily life more complicated for long.

    My daughter just turned 3 last week, so her personal opinion is only just beginning to complicate her diabetes management...;) but I hope we can always find a balance between what I think is best for her health and what she wants.

    I guess it's all very individual ... but for us the small, additional site, (which typically causes us less trouble than her infusion sites and only has to be changed every 7-10 days), is an easy trade for the 8+ finger sticks per day it's replacing. The fact that it has saved her from too many lows to count, and has alerted me to 2 overnight site failures that led to mild DKA in a few hours time... priceless.
    If we had problems with false alarms or the system's accuracy I might feel differently, but to me the alarms are very beneficial and allow me to stay on top of her numbers and potential problems w/o stressing about them all the time. I actually think about diabetes and numbers much less often now than I ever could before, and if somethings out of line it will alert me. The longer we've had it, (10 months of constant use now), the more we've loved it and the more normal our lives have become.
    As far as "information overload" I don't think it's ever a bad thing to know whats actually happening with your blood sugar all the time, the key is not becoming obsessed with it. ;) You can set the alarms to different levels, or even turn them off to suit your needs. You can peek at numbers and trends all day, or only upload the sensor data at the end of the month when you're ready to make adjustments and see the "big picture".

    I guess in some ways I'm lucky that I still have complete control over how I chose to manage Emma's diabetes, and that the burden of those choices falls primarily on me. It makes the decisions a little easier.

    Good luck with whatever you decide!
     
    Last edited: Sep 4, 2007
  18. 1luckymom

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    2nd site and cost are our reasons. Can't wait until the cgms is integrated!
     

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