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So Some Good News Today/Curious Position About CGM

Discussion in 'Parents of Children with Type 1' started by sszyszkiewicz, Mar 26, 2014.

  1. sszyszkiewicz

    sszyszkiewicz Approved members

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    So today we had our first real follow up and our first post diagnosis A1C. They said DS's A1C is a 6, and they were happy with that. I know we are smack in the middle of our honeymoon, essentially a mulligan in this nutty world, but I was glad that we kept our son healthy these three months. It was funny when they asked "Do you think his A1C is a 6 because you have a lot of highs being balanced off against lows?", and I was able to say with accuracy 'We have been between 70 and 180 73% of all readings, and less than 180 81% of all readings, of which there were 954". I got this blank stare, then I said "I am a data guy in IT." They then rolled their eyes and laughed. I also had in my mind what his A1C should have been if our strips/meter were behaving, and 6% is about what I had calculated so one less thing to worry about on that front.

    I want to thank everyone who helped these last few months, directly or indirectly by posting questions/answers that my family certainly benefited from!

    The bottom line is we took it very seriously my wife and I, and so has our DS. So today was a good day.

    We also talked to the nurse practitioner about a Dexcom G4. At this stage she is biased against it. Her experience is that since we are in the honeymoon, with swings abound, she has noticed that starting a CGM now leads to kids worrying about things too much. She said that at his age (he just turned 12) that it would alarm/shake so frequently that the kid would never wear it and it would hurt more than help because of the anxiety and it would potentially bias my DS against technology in the future. This is based on her clinical experience. She didn't say she wouldn't support it, but she did say we should think twice. She also stated that doing the CGM separately would make it so that he had to have two devices to carry around when the pump happened ( we are supposed to get trained on a pump in June).

    I know a lot of folks on these boards use the Dex/CGM and love it. Are there others out there that can sympathize with that reasoning? Does starting a CGM for a 12 year old make things potentially worse? Has that been your experience?
     
  2. Megnyc

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    I'm going to be totally honest here and say that that is a ridiculous line of reasoning. You can turn off the high and low alarms or make them super wide. The only mandatory alarm is the under 55 alarm and with the accuracy of the dexcom you WANT to know if it thinks your kid is under 55. My personal experience (started CGM at 13 back when it was extremely rare to use CGM and they were more uncomfortable and bulky and less accurate) was that while it can be annoying at times, it greatly reduced/eliminated my anxiety about diabetes.
     
  3. wearingtaci

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    I can tell you that in my daughters case(she is 11)her anxiety over BG levels is almost zero since she started CGMing. She is hypo unaware and because of that and her fear of having a serious !ow she was testing about 12 times a day. Now with the CGM she only tests 4 times a day and when Dex alarms. Her quality of life has been greatly improved
     
  4. Lakeman

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    They have to ask since some people do get "good" A1C's due to lows in which case they are not all that good. But in your case they really are good and despite still being in honeymoon. Congratulations you are doing great!

    I suppose some people do experience anxiety and obsess on the CGM. A quick search on the net and you will find people who well tell you that they do that. But only you can know how you and your child will react. Also only you know how it will be to have two devices.

    The CGM is great for fine tuning meals, spotting trends, heading off lows, and treating highs as quickly as possible. Can you benefit from this?
     
  5. StacyMM

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    In my opinion, that is some crazy logic. My kids worry LESS with the Dexcom. Alarms are customizable, as are volumes, and carrying is a Dexcom receiver is the absolute easiest part of their diabetes routines.
     
  6. Ali

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    Agree with others you can turn all alarms except the under 55 and never look at it or be bothered. You as a parent can look at the data and do trend analysis to adjust dosing. If your child wants to be involved they can and if you are relaxed about the numbers they will be also. I think for most of us with T1 the help with picking up on lows with out having to test so often reduces anxiety by a huge amount. Also I wear one and it is boring to just watch it or obsess about it, I use it to reduce the time I spend on diabetes management. For you and your kid getting help on alarm settings and trend analysis can make using the CGMS non stressful and easy. The professional you were speaking with sounds as though she may not be the best for that part of using a CGMS.
     
  7. Lisa - Aidan's mom

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    Sorry they weren't more supportive. It's an amazing tool and I can't imagine being without it. Once the nicer weather comes around and your child is outside running/exercising it is really valuable to not have to stop and check to see what is going on.
    I received a very similar response when I asked our former endo about it (wondering if you go to my former endo - noticed you are from NJ, lol).

    Good luck!
     
  8. hawkeyegirl

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    My son gets much more freedom because of the Dex than he would have without it. I, too, think her line of reasoning is nutty. There is no reason it needs to be alarming enough to be a nuisance to your son.
     
  9. Sarah Maddie's Mom

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    I really think that endo's are always the last to know what works. :wink:
     
  10. Jordansmom

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    When we started CGM five years ago our endo's office tried tot talk us out of it with similar negative advice. They are clueless.

    We unofficially trialed the dexcom when we borrowed it from a friend. My DD was 12. I had to persuade her to give it a try. At the end of the week when we had to give it back, my DD cried. She told me she had secretly been scared to go to sleep since dx and that she felt safer with the dexcom. She has worn it almost every day since our first Dexcom 7 arrived. 100% always her choice.

    In the teen years the Dexcom can give them so much freedom and you much needed peace of mind. Sleepovers, school trips, sports, crazy schedules, junk food, and hormones are all easier with the Dexcom. Teen driving is scary enough without dex. I don't know what on earth I would have done it without it.

    I do think teen boys in general might be a bit more resistant. What does he want? At 12+ I think it should be mostly their decision. As far as obsessing or worrying, they take their cues from you. If you're positive about it, they will be fine. As an involved parent (and especially a numbers guy) you will get obsessed with the data. Its unavoidable in the beginning, but get over it. That's how it can become a negative experience, especially with a preteen/teen. There's a balance you have to find. But if you do it can be an incredible tool.
     
  11. SarahKelly

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    I completely agree with this.
    And here's the thing, the CGM isn't permanent - if your child has an adverse behavioral change to using it than just stop. In our family we've seen that the CGM has given my son more ability to laugh over BG's, he has songs that go along with the sounds and when the sounds are annoying him he just tosses the receiver to me and asks me to turn them off. WE don't make the CGM a "have to" at this point with him, however he chooses to use it most of the time for school and oftens asks to have it off for the weekend or long breaks. So, it is really up to you and your family.
     
  12. Mish

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    My son has done both integrated CGM and independent CGM. Initially we thought integrated was a fantastic idea because he wouldn't have to carry around two devices. And, this is true. That's about where the benefits ended. Integration isn't everything. For instance, when the MM would alarm at night no one would hear it because it was tucked under his sheets and blankets, in his pajama pants. Hardly helpful. Also, any time I needed to see what was happening I had to get his pump out and look at it. Having a fully separate system allows me to leave the g4 in my room at night, not his. It allows him to just leave it on the kitchen counter when he's home and I never have to bother him to check it. At school, he can leave it in his backpack or belt, or with his meter. It really hasn't been an issue, in fact, I don't think we'll ever go back to integrated again, unless integration is offered with a standalone unit.
     
  13. minniem

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    That sounds exactly like what we were told too. My DS would never wear it and he wouldn't want to carry 2 devices. Well, plain and simple they were WRONG in my DS's case. We started the CGM about 3 months after the pump and originally used the MM one as it was integrated. And while the integration was great, that's where it ended. We had trouble hearing the alarms at night and it was always "off" sometimes by 30-40 points. MM was also painful to insert for my son. A year after we started MM we switched to Omnipod and Dexcom. I was told he wouldn't want to carry 2 devices, etc. Wrong again. The Dexcom is night and day different (better) than the MM was for us. It's more accurate, has better range (I place it on my nightstand at night and it picks up DS in his room) and the sensor's last longer and are less painful for my son than MM.

    On an off note, I was just asking DS last night if he wanted to take a CGM break for the week he goes to camp. (He wears his CGM 24/7). He said no way, he likes his CGM and it has greatly reduced his anxiety wondering what his BG actually is. He doesn't obsess over the numbers, but it's so easy to just take a quick glance at the dex and see about what his BG is. We also use it a lot for sports. He plays baseball and I'll hold it in the bleachers to see how he is doing. It's much quicker to glance at the CGM and get an idea about blood sugar than to do an actual fingerstick (though that's quick too). My son is 11 (almost 12) and started CGM'ing at 9 1/2.

    Good luck to you and what ever you decide. But you and your son are the one's living 24/7 with this disease and you know what will work for your family best!
     
  14. Melissata

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    Agree with what everyone said, and wanted to add that starting on a pump will be much less difficult with a CGM.
     
  15. kt_mom

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    We got a similar response from our endo office when we asked to get started on the dexcom. I had to push and push but they did finally sign off on it. DD is the one that really wanted it because she was scared of lows particularly at night. We've been using it since the first of the year with a break over spring break and we love it. We haven't even gotten into downloading the data and watching for trends and stuff.

    For us its great becuase now DD doesn't have to do finger sticks as much as school like before recess and PE and stuff. But she does get that warning buzz if she goes low during PE or something. She can also check it before tests to make sure she's not high. At night its wonderful to know she's going to bed steady or see that the low/high treatment is working. Some days we end up doing more finger sticks becuase of the dex because we don't treat or eat without a finger stick. But some days its less. Some nights I get more sleep and some nights I get less. Its great for sleepovers too. Overall its given her some peace and as long as she wants to use it we will.
     
  16. KatieSue

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    We also got a similar response when I asked about a CGM. My thought was to start her on one so that she'd be up and running when she went to college next year. The endo basically said he thought it wasn't a great idea and it would be just one more thing for her to deal with on top of college. He didn't say no just that he didn't think it was needed.

    Then we did a clinical trial and she got to test one. She liked it. A few months later she had a spate of weird out of the blue lows and asked if we could get her one. So we did. She likes that in class she can just look at it instead of hauling out her kit and testing if she feels off. We do take a break between sensors. Usually a few days. She says the area gets itchy.

    I'd speak with your son and see what he thinks.
     
  17. MEVsmom

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    I completely agree with the poster that said it gives their child more freedom. My child is 8 and I dont' worry leaving her for activities becasue I know she has the CGM as a tool. It helps her head off lows and miss less class time at school. It helps us spot trends and know what foods are problems. It also gives us more comfort at night. We have yet to find a negative and it does not stress my daughter out. In fact, it gives her more comfort.

    I had to ask about the CGM about 2 months in. My endo did not recommend it to me without my questioning; however, they did support the decision.
     
  18. liasmommy2000

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    My dd has mild anxiety issues. She hates the Dexcom (she finds the insertion painful). However she has come around to it because it actually relieves her anxiety. I let her take a few days break in between sensors. She used to argue when it was time to put a new one in but now she usually asks as it helps her feel safer. Granted this is mostly for the night time.
     
  19. sszyszkiewicz

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    Thanks everyone!

    We will be discussing this with DS this weekend. I am inclined (strongly) to get the Dex.
     
  20. MamaC

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    Steve, you're a data guy. That's what you'll get from the CGM. The trend information is super helpful in management.

    The honeymoon, even an extended one, won't last forever, and as stated above, you can contour the alarms.

    I think you'd all be very pleased with the device and the technology.

    PS Figuring out this early in that the D team isn't always infallible should boost your confidence in what you've been doing for your son.
     

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