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For those who don't CGM...why not?

Discussion in 'Parents of Children with Type 1' started by Beach bum, Dec 8, 2011.

  1. Beach bum

    Beach bum Approved members

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    I didn't want to hijack the other thread.

    Some days I feel like I'm really in the minority for not having my kid on a CGM. At this point, we feel we are doing very well, and our nurse/endo both concur. But, there are times when I feel like I should have her on one, especially now that she's pre-pubescent. We felt that with our child's personality she would obsess about her numbers (gee, I wonder where that comes from:rolleyes:), be constantly going to the nurse (transitioned to a new school don't want her missing so much class), and we are transitioning to a new nurse. We are also waiting very patiently for Animas to come out with the integrated unit.

    So, I'm curious why others aren't using it?
     
  2. danismom79

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    I'm letting my daughter's feelings/opinion weigh very heavily on my decision. She's almost 13, she doesn't want something else on her right now. Although it would be useful for me, I don't think it's a necessity for us at this time, so I'm not going to force it. I did bring it up at our last CDE appointment, and I think my daughter's resolve faded ever so slightly when she saw just how small the CGMs are. I'd like to use one intermittently, just to help with wonky times.

    I was thinking about trying the Dex, but I've seen more posts than I'm comfortable with about wires coming off under the skin.
     
  3. Amy C.

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    I never had the perception that non CGM users are in the minority here.

    My son has stated he would consider using a CGM when Animas can sell the integrated unit in the US. Doing it now would require too many items in his pockets.
     
  4. Christopher

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    Danielle is 13 and her feelings are a key part in any diabetes decision. How much a child gets to decide on their care is a hot topic around here, but that is just how it is in our house. To each their own.

    A year ago when she was considering a pump, she tried a "blind" CGM for 3 or 4 days thru her Endo's office, because their rule was that you had to wear a CGM before you got a pump. I personally had some concerns about this rule and, unfortunately, my concerns we realized. She really did not like the feeling of the CGM, it was itchy and uncomfortable. And we didn't even get the real time feedback that makes the CGM so useful. So she took the CGM off and also said she did not want to try a pump either. Which was exactly what I was afraid of.

    I am hoping as she gets older she will reconsider both the CGM and the pump, but for right now she is managing pretty well without.

    It sounds like you have thought this through very well and you should feel comfortable in your decision, regardless of how many people on here use a CGM. Do what works for you and your child.
     
  5. MamaC

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    He's almost 19, dx at 13, and doesn't want the CGM (he did do a trial) or a pump. He doesn't like being "attached" to things, and is willing to do extra checks and injections. Not my preferred approach, but he's an adult now.
     
  6. DsMom

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    My son has actually been asking for a CGM, and we were all set to get started this past summer when my FIL had a major stroke. Since then, stress levels have been very high in our family (FIL is seriously disabled now), and I don't want to start something that I know will be stressful (at least in the beginning) during this time. I also wanted to start over the summer so I could keep an eye on things and hopefully iron out any rough spots before he had to use it in school. I'm also worried about using his tummy as a sensor site. He has zero fat there, and we had a lot of trouble when we tried his pump site there.

    However, a CGM is definitely still in his future. I think we will shoot for this summer.
     
  7. L101418

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    They are 12 and 15 and they do not want one. They do not want another insertion site. They can feel their lows and their A1Cs are good so I respect their decisions at this point. Would be nice though.
     
  8. Beach bum

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    Thanks, yes we've thought about it a lot, but the recent offer to be in a trial has opened up those thoughts again. Oddly, our nurse has basically said to hold off on the trial because most of the pre-tween/tween patients at our clinic who have been on it choose not to pursue it anymore. She said she'd rather have everyone wait until they are all on board in go into it dedicated to having CGM wearing successful. My daughter isn't 100% right now, though she has expressed interest (always after camp) and I'd rather wait a bit to when she's more open.

    So, right now, I am totally comfortable with the decision we have made.
     
  9. manda81

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    We have discussed it. He doesn't want to wear another 'thing' on his body. He's done very well with his pump, his numbers are good, and he's great about 'food in one hand, pdm in the other'. He's only 6, but we try to respect his decisions when it comes to his body, within reason, of course.
     
  10. Tigerlilly's mom

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    We don't use one for a few reasons....the biggest reason is for Tyler when he has the CGM, his diabetes is RIGHT in his face all the time, the alarms, calibrations etc., are just a PITA to him. He also caught his lows before the sensor did, so he felt that there was no added benefit in terms of "keeping him safe".

    He is doing well without the CGM. We are pleased with his a1c's as are his CDE and Endo.

    Luckily for us (me), he is doing a study through Joslin that he uses a blind sensor every 3 months for 4 days, so I DO get some of the benefits of the sensor without the "hassle" of it.

    Everyone has a different approach to how they manage their child's diabetes, finding a balance that works for them both physically and emotionally can be tricky.
     
  11. AlisonKS

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    sensory issues-same reason he's not on a pump-which we get asked about by 90% of people who don't have diabetes in their life but have heard about "these things that go in the body and control everything" lol.
     
  12. StillMamamia

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    Financially not very doable right now. Hopefully it will covered by the Health Ministry one day. I'd love one to use once in a while, since I know my son would have a cow if he had to wear it every day.

    It would be good for those times when you just go hands up, I have no idea what's going on...like now.:rolleyes:
     
  13. GaPeach

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    Ditto for our skinny 13 1/2 year old. She is very adament about it.

    She wasn't too happy when we started the pump in 2008. Now, she would fight you "tooth and nail" if you tried to take it away.

    The right time will come when she sees the benefit far outweighs the extra site.
     
  14. Beach bum

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    See the study we are being asked to participate in (at Joslin) has two groups, one working and the other blind. No telling which group we'd end up in.

    I know if Animas had the integrated CGM it would be more of a non issue as it would all be in one and she wouldn't pay attention to it, where as with the free standing, I know her, she would be more attentive to it, and not in a good way.
     
  15. JaxDad

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    We've not talked to our endo or son about it. We're doing well with the pump and just don't want to add another attachment to him. When there is an all-in-one I can't see why we wouldn't get it.
     
  16. caspi

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    My son is 13 and he doesn't want anything else attached to him.
     
  17. Lee

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    Another 13 year old here. I LOVE IT! She hates it. She says the site hurts will it is inside her body and she finds the alarms very disruptive. We tried no alarms for a while, but the site still hurt her.

    I wonder if any other kids have complained about the sensor being painful/irritating or if it is just because of her metal allergy.
     
  18. zoomom456

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    We have a few reasons. The biggest is financial. Another reason, I'm not sure how my son would do if he had another insertion as he does not like pump site insertions currently. I do have some concerns about a second thing to be carried around to and from daycare with a 3.5 year old. Part of it is somewhat personal on my part as I don't want my son to be the kid beeping all the time, though this is the smallest, most petty reason lol. Since we will have a lower deductible next year and will easily meet , we are still considering CGM. I am not sure how easy it will be to convince our insurance company since Williams numbers are rarely below 50 or above 250 on the pump.
     
  19. CAGrandma

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    Strictly financial, but we're saving up and will be getting one. Plan to use it about 1 week a month to get a better look at patterns and more information to tweak rates, ratios. 8 year old says he's cool with the idea. Weird Xmas gift, right?
     
  20. StacyMM

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    DD doesn't want one. Plain and simple. She absolutely hates the pump already. In fact, we're going back on MDI for awhile. We told her we would re-evaluate when she was 8. She's 8 and she still hates it so shots it is. We're getting new scripts at the doc's next week.

    Her body, her diabetes, her decision.
     

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