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Scientific Sessions Update: Continuous Glucose Monitoring in the Youngest Patients

Discussion in 'Parents of Children with Type 1' started by Alex's Dad, Jun 27, 2011.

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  1. Alex's Dad

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    We don't have a CGM but from what I've read in this forum I would love for my daughter to wear one. Are they saying now that it doesn't improve their AIC's?:(:confused: I don't know how reliable is this source.:confused:


    http://diabetesstopshere.org/2011/06/27/scientific-sessions-update-continuous-glucose-monitoring-in-the-youngest-patients/?utm_source=Facebook&utm_medium=Post&utm_content=062711-CGMs-youngest-patients&utm_campaign=DSH_BLOG

    Scientific Sessions Update: Continuous Glucose Monitoring in the Youngest Patients
    Posted on June 27, 2011 by Dayle
    Using a continuous glucose monitor (CGM) in young children has not been studied. But researchers, health care professionals, and parents know that glycemic control in children with diabetes is often limited by the fear of hypoglycemia (low blood glucose), but the opposite, hyperglycemia (high blood glucose), can actually contribute to risk for cognitive impairment. Parents are intrigued about whether CGMs could minimize both these risks.

    Researchers gave CGMs to a group of children (with instructions for their parents!) who were less than four years old who had type 1 diabetes. After six months, they found that the risks, such as skin reactions to the adhesive, were minimal. But so were the changes in glycemic control ? in fact, using a CGM did not result in a lower A1C at all. Instead, the CGM documented that high blood glucose levels were present more than half the day.

    Thought CGM use did not improve glycemic control in this young group, it may help ease parents? concerns of low blood glucose, and in the future may allow more confidence in treating high blood glucose.
     
  2. hawkeyegirl

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    The source is fine. But I don't know that the study tells us much. Only 9 of the 26 kids were using the CGM full-time at the end of the 6 month period, and I can't tell from the abstract if they got better results or not. But 9 kids is too small of a group to draw any conclusions.
     
  3. Christopher

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    Did they get treatment based on the information from the CGM? I think the important question is what did they DO with the CGM info. If they didn't do anything with it then of course it is not going to make a difference in the A1C. But if they used the CGM info and the A1C did not improve, then that would be more of a blow to the efficacy of the CGM.
     
  4. selketine

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    My take on this is that with any age child (but the younger ones are tough - BTDT) that they may indeed spend half the day very high - and have significant and speedy drops in the BG - which all gets averaged out in the A1C.

    A cgms (if actually worn all the time) could lead to less variability in the numbers. Without the lows the A1C would be the same or higher -even with better overall numbers.

    A person can have brilliant A1C numbers - and achieve that through repeated and undetected lows - and not know if they aren't wearing a cgms.

    I think it is possible to lower the a1c eventually with the little kids - but the quality of life issue and prevention of damaging or life-threatening lows is enough reason to wear it. I think it is ridiculously stupid to make the A1C the most important variable in that equation.
     
  5. hawkeyegirl

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    I also think that it takes a long while to learn to use the CGM to its fullest capabilities. At the 6 month point, we had just scratched the surface. But maybe I'm just a slow learner. ;)
     
  6. Lisa P.

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    This.

    CGM does not improve our A1C, necessarily. But it means I'm more likely to average 200 because she spends much of the day between 100 and 300 than I am to average 200 because we're averaging a bunch of 30s with a bunch of 450s.

    That's a really big deal, at the very least a big deal in how she feels.

    Also, I didn't read the article, but from the blurb, they seem to have missed their own point. Without CGM, an A1C can be artifically drawn into a good range by a whole bunch of undetected lows. With CGM, you don't get those. So if you assume this is a bunch of kids that maybe hit 20 three times a week, having the SAME A1C clearly means having a BETTER A1C.

    As for the usefullness of CGM on little kids, I'll reiterate my favorite CGM point. CGM is not accurate for us, not by a long shot. And I would give up my daily coffee before I'd give it up (and that's saying a LOT). Great tool, but works differently in most small children, so don't think it will build your cathedral for you, but it'll get you a working garage!
     
  7. Ali

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    FWIW
    As an adult; for many of us learning to work with a CGMS takes longer than six months. Also my A1c has not changed much but the time I spend high and low has improved dramatically. I am much more stable for 24 hours. This is not a very good study in my opinion, too short, too limited in what they looked at. For me the number of bad lows, below 60, has been reduced dramatically since being on the CGMS. :)Ali
     
  8. Darryl

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    Well, if the CGM merely documented high BG levels for half of each day, that pretty much means that the caregivers were looking at the high BG's but not treating the high BG's. I suppose that eyeglasses would not help with driving either if we did not steer away from the edge of the road when we saw it approaching. If only 9 of 26 were using the CGM, it does not sound like the group was well trained or supported during the study.
     
  9. SarahKelly

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    kind of a sad report isn't it? I think what it proves is that the CGM is another tool that has to be figured out to be helpful, at least that is what we've found. It's not like what the non-d community thinks, that you slap it on and it magically makes all things easier (I know you know this ;)) I kind of think of this like the AP, which many people who aren't around those using pumps or CGM think that the AP is "the cure" not realizing that it is still just a piece of technology that needs tweaking and careful attention to, it requires BG checks at precise moments (BG not changing to greatly) and doesn't remove the fact that the person with it has two tubes/wires sticking in them at all times. Anyhow, I digress...
    ...about the CGM though, I know I have been very grateful for it, but it has taken time to figure out. I don't think it's changed Isaac's A1C (which didn't need to be changed), however I do know that it helps us make major and minor adjustments so we're not shooting in the dark so much.
    So, cruddy article - but proves what we already know, right? :)
     
  10. jules12

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    I think there is too many variables to affect a1c. Our a1c went up quite a bit at first because cgms almost elimated are lows and especially the scary ones below 30. Then we ended the honeymoon and all our levels had to increase for quite a while. We are finally getting things back to our current normal and his last two a1cs have been going back down.

    I do agree it takes a while to figure out how to best use the cgms for you so that calibrations, where to put the sensor, etc. is working.
     
  11. joan

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    I hate these type of studies which really don't prove anything. Our old endo would read this and tell every parent of a small child that requested the CGMS that studies show it doesn't help A1c and discourage them from getting one.
     
  12. selketine

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    You're right there too - I really didn't get good at it until summer came and he was off from school and home with me all day - and I could stay up until 2am or whatever I had to do.

    Younger kids are a difficult group - WAY more sensitive to the tiniest bit of food or insulin.

    I also question why 2/3's of the children in the study had stopped wearing it by the end of 6 months. I wonder if that is typical of those given a cgms - that over 50% will stop wearing it continuously.
     
  13. Lisa P.

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    This is true.
    We have a good endo. But he heard the downside of CGM tech and so discouraged his young patients from trying it until the tech had improved. Because of that, he didn't get to hear feedback from patients that might have used it successfully, so it just reinforced his "bias" against it.
    Relying on studies like this is problematic.
     
  14. Nancy in VA

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    We actually wore the Navigator for 2 years - Emma was 4 when she started wearing it. Our A1C stayed within 0.3 of what is was before the CGMS. We did eliminate some lows but overall, the A1C didn't see much change.

    I personally think that all of these are tools. Some people, I firmly believe, are easier to control than others. People that get distressed because their child's BG was 250. Shoot - 250 is just fine with Emma because its not unusual for her to hit 400. So, I think that CGMS is just a tool and it may help some lower their A1C and not others, and it has little to do with the CGMS and more to do with some patients being harder to manage that others

    We've actually been on a CGMS break for a couple of months. Just intended it to be a few days and its stretched out. As much as I like having the CGMS, right now, I'm not missing it. We're still fingersticking the same. We're having a few more frustrating lows than we were on the CGMS, but I'm not feeling my management of her diabetes being hindered by NOT wearing it right now. I need to get it back on her as we are starting to head to the pool and I want it for swimming since its erratic.
     
  15. Lisa P.

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    It takes either time or good support to use a CGM effectively. I think it's funny how many of us needed time, because support wasn't happening. I think most of us got basic rep training, but the day to day usefulness of it we had to figure out ourselves and here.

    So, I think if the medical professionals taxed with helping kids manage their diabetes were well-versed and put time into training and supporting CGM use, it would be an entirely different story. This isn't a plug it in and go sort of tool. This thread makes me wonder how many folks have tried this great device and tossed it after a few months because they didn't get what they needed to use it well. I'm good with people choosing not to use it, but not using it because they didn't get what they needed to use it well is a shame.
     
  16. JeremysDad

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    Using a CGM means absolutely nothing if the user chooses to ignore the beeps and alarms indicating a high/low BG. A CGM is a tool and that tool needs to be used in order to be beneficial. It all comes down to responsibility. How responsible is your CWD in acting when he/she hears the beep (or vibration?)

    I am a little frustrated, not with the CGM, it's doing it's job, but with my own CWD who finds it easier to hit "ok" when his Dexcom beeps and then continues about his business without bolusing if the CGM tells him he is high. Yes, he is a teenager and yes, we are his responsible parents but unless we are next to him 24 hours a day, nagging him to bolus, it doesn't happen as regularly as it should. He does not hear the alarms at night, even though the Dex is 5 inches from his head. (Maybe he hears but does nothing). Luckily he can feel a low and will wake up.

    So, without derailing this post, I think a CGM, if used the way it was intended, can very easily bring down an A1c but ultimately that depends on the desire of the user to take action when action is called for by the CGM.
     
  17. joan

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    When my son was little he always had good A1c's. Who knows he could have spent half the time at 50 and the other at 350. A CGMS at that time may not have improved his A1C (he did not need that) but definitely would have improved his variability. Not everything is about improving A1c.
     
  18. Ali

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    I posted already but wanted to restate what Joan said. As someone with T1 I find the variability very tiring, stressful and uses a lot of time to deal with. The smoother my numbers the easier day to day life is and the better I feel. This may not be true for everyone but I noticed the improvements in my well being every time a new insulin, tool, management device became available to me as a T1. The support still is lacking for many CGMS users and better software that would help analyze and suggest solutions to problems would help parents and the user. Ali
     
  19. joy orz

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    Ditto to everything Lisa said.

    Ava went on the CGM when she was about three. It's made a HUGE impact on her overall health, and our family's well being. But honestly, hasn't made a dent in her A1C. I keep hoping we'll get into those magic 6's, but alas, not happening. However, I can't stress how important a tool it is. Nights are wonderful, school is relaxing, and I can actually send her off with friends who will babysit her knowing they will respond to the CGM alarm.

    On the flip side, I'm really frustrated that our medical team is behind the times. I am NOT a good pattern spotter. I'm slow to make changes. I want to take our CGM reports in to our appointment and say... fix this problem we keep having here. But they won't even look at it. They just say it looks like spaghetti to me. Yeah, me too!

    I SO VERY MUCH WISH dexcom would do trainings on how to adjust basal rates based on CGM data. Our training consisted of a two hour meeting on how to insert the sensor. Good luck to ya!
     
  20. Darryl

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    One key to success with CGM's is to put behind you the concept of "patterns." A CGM works magic when you simply set tight alarms and respond to them. To get A1C into the low 6's, you could set just about any basal pattern to start with (even a flat basal all day), set the alarms at 100/140, and correct every time BG goes outside those ranges. You'll get some idea as time goes on how to change the basal to avoid repeated corrections at the same time each day. To get A1C into the 5's, we set the CGM alarms at 80/100 and correct every hour when the alarm goes off. We don't really look for any patterns, though, we just correct hourly.
     

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