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Considering CGMS - intimidated - your experiences?

Discussion in 'Parents of Children with Type 1' started by vanryn, Aug 24, 2009.

  1. vanryn

    vanryn Approved members

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    Hi

    I am the mother of a 12 year old daughter who has been pumping with a Paradigm since she was 5. We believe she would do better on CGMS, especially in school. She is not happy about that idea but will accept our decision - she doesn't want "another thing to stick in my body!!". She is super sensitive and prone to anxiety - if a site change goes bad, she is very anxious about the next one.

    So, I am intimidated by the sensor insertion. We use Emla or LMX. The Quicksets are short and go in at a 90 degree angle. The mm sensors go in angled, which is unfamiliar, and on adult forums I see posts about problems with the Sens Serter.

    What has been your experience with it? Is it worth it? Are the site changes as bad as I fear? Has anyone switched to the Navigator for that reason?

    I would be very grateful to hear about your experiences

    Thanks
    Michelle
     
  2. Jessies_Mom

    Jessies_Mom Approved members

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    We just started on the CGMS but only three weeks after starting on the pump. We're a bit overwhelmed right now but managing and we know we always have the option to not use the sensor for a while and come back to it.

    My daughter was terrified of the sensor placement device. She got herself so worked up before the first one she was pale, clammy, sweaty and I really thought she was going to faint.:( But....she used EMLA half an hour prior and said she hardly felt anything. She's on her third sensor change and admitted last night they feel better going in than her infusion sets, sillhoutes, which she does by hand without EMLA.

    Even though we're still new and getting used to everything my hope is the CGMS will help us get her pumps basals tweaked better.

    If your daughter is high anxiety prone you'll have to ask yourself what you hope to get out of the CGMS and if it's worth it. Best wishes:)
     
  3. Darryl

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    The site changes are fairly easy, thanks to the "senserter". As to anxiety, that is natural before the first time it is tried, but if it works well, it may remove so much other anxiety about high and low BG's, that your daughter may actually find it to be desireable. My dd is more than 2 years into full time use, and it's a miniscule part of her routine now - the insertion takes 30 seconds out of each week, and for the rest of the week she has no worries about D.
     
  4. emm142

    emm142 Approved members

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    I can honestly say that considering the circumstances around the time that I used the sensor, the 16 days I used it were absolutely amazing in terms of my BG control. The sensor insertion is fine for me, but obviously I'm a little older. I was a little freaked out at the insertion of the first sensor, because the needle seems a little thicker than that of the silhouettes (which are roughly the same length) but both insertions have hurt less than infusion set insertions. It is possible to override the alarms to change the sensor at 3 days, and I got 8 days out of the first sensor before it went kaput, and I'm on the 8th day of the second sensor right now. The accuracy isn't quite good enough to dose off (as it was in the first 5 days or so) but it's still helpful for trends. So, it varies between people, but you might also not have to do the site changes as often as you think you will.
     
  5. Christopher

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    It sounds like your daughter does not want it. And she is old enough to be part of the decision making process, so her wishes should be considered, in my opinion. You didn't say what is going on with her diabetes management that is making you want a CGMS. Is it a safety issue, is she going really low and not feeling it?
     
  6. hawkeyegirl

    hawkeyegirl Approved members

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    We use EMLA and my needle-phobic son does not feel the insertion at all. I've inserted one in my own stomach, and think it hurts less than a shot.

    The CGM is nonnegotiable in our house, but my son is younger. I think it's legitimate to ask a reluctant child to try a pump or CGM for a couple of months. They have no idea what it's like until they try it, and most times they end up loving it. Kids are naturally reluctant to change, and often will stick with something they know rather than take a chance on something that may be much better for them. Adults are better equipped to objectively assess the pluses and minuses, and can often act logically instead of out of fear of the unknown.

    Obviously there are many who disagree with me. I've seen people on this site let their 3 year old choose whether to pump or get a CGM or not. More power to them - there are lots of parenting theories out there. I just wanted to reassure you that I don't think you're in the wrong for encouraging your daughter to try it. If she doesn't like it, what have you really lost? But if she never tries it, she could be missing out on something that those of us who use it on our kids know is really great. :)
     
  7. Jessies_Mom

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    I forgot to add.....before we let our daughter just say "no" to the CGMS we made a deal with her that she has to at least try it first and by try it, we mean for like a month.
     
  8. Jeff

    Jeff Founder, CWD

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    The science supporting better outcomes with CGM is solid -- but you have to use the sensors to see improvement. This might seem obvious, but some studies show that sensors "don't work" in teens because they don't use them as much as other ages. To me, this doesn't mean that sensors don't work in teens -- it means that sensors don't work if you don't use them.
     
  9. vanryn

    vanryn Approved members

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    Thanks...

    Thanks for the input. As to the discussion over whether or not I should insist she try it, I am on the side of the parent being responsible for the decision. If she hates it after a month, we will reconsider. I just can imagine her at age 30, with complications, asking me why we didn't use something that has been shown to improve A1c and me saying "you didn't want to try it". My guess is she would say "Mom, I was TWELVE."

    So, we go to our pediatric endo tomorrow to borrow a system for a week. They are pretty insistent on that.

    Thanks again, this has been very reassuring

    Michelle
    :)
     
  10. hdm42

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    Good luck. I hope you'll post and let us know how it all goes.
     
  11. vanryn

    vanryn Approved members

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    24 hours later with CGMS

    :)DD has been using CGMS for all of 24 hours and really likes it! The 24 hours of information has been very helpful.

    The appointment with the Ped Endo nurse was a bit of a nightmare... DD was upset, begging me not to make her try it, terrified of the first insertion. It was pretty awful and made me feel like a horrible mother. After the sensor was in, she cheered up immediately. I guess she just didn't believe it wouldn't be excruciating.

    Five hours later we were in the car and about to go out to lunch. She said "You're right mom. I really like it."

    So, so far so good!

    Michelle
     
  12. hawkeyegirl

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    I'm so glad! The needle really does look a lot worse than it is. :)
     
  13. Corinne Masur

    Corinne Masur Approved members

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    Cgm

    Congrats! That's a victory!!! Has your daughter gone to diabetes camp? I've found that camp is really helpful in normalizing all this stuff - and reducing the anxiety - seeing other kids using the pump and the CGM, even inserting it themselves has been SO helpful to my son. We were using EMLA for every insertion and doing the insertions for him - both pump and CGM. Since camp this year he's been doing the insertions himself and using NO EMLA!!!
     
  14. Darryl

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    Just backing up what Jeff said - watch this short video from a talk given by Dr. Hirsh . He was one of the endo's who conducted the JDRF study.
    http://www.youtube.com/watch?v=gOoyEHDS_24&feature=channel_page
     
  15. Darryl

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    Congratulations... it's great when all the anxiety over the CGM ends up with the child wanting it once they see the benefits first hand.
     

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