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3 Day CGMS being considered for Doc's Office

Discussion in 'Parents of Children with Type 1' started by mischloss, Mar 10, 2009.

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  1. mischloss

    mischloss Approved members

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    My son has been up and down so much that I thought it would be a good idea to hook him up to the three day "blind" CGMS. It is the one where they put it on at the doc's office and then send you home for 72 hours and then you come back and they download the information to see what the trends are. My endo is going to file with insurance to see if we can qualify for it. My son doesn't want a permanent CGMS on him. One more thing to have stuck on him and he would lose the Pager for sure! ;) So this is just a small way of seeing what some issues are with bg's without committing.

    Anyway, my question is...would it be better to have it done during the weekday (normal school times, meals and sleep) or go for the "wild" erractic weekend time (sleeping in late, skateboaring for hours, staying up late), for accurate trending??

    Thanks!
     
    Last edited: Mar 10, 2009
  2. Hollyb

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    I've wondered about that myself.

    If he's up and down on weekdays too, I think I'd be inclined to start there -- because there's more of a pattern there to start with, and if you can settle his BGs down for 5 days a week that's huge.

    Weekends -- I dunno. If he's like my son, they are so variable. What you got on the CGM might not even much resemble what happens on the next weekend after that?

    Hope it works out for you!
     
  3. 2ladybugs

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    We had this done a few years back and we actually had it put in on a Thursday afternoon and removed on Monday afternoon. We were able to get some really good readings of both the weekday hustle and the weekend chaos! If you can swing this, I would go for it. The unit itself can sense for up to about 4 days or so depending on how good the site is.

    Remember, though, this unit (unless they have a new one that I don't know about) is completely hooked to him! Cannot be removed and has the blind data going on. I hated not being able to see the info! :mad: This is nothing in comparison to the actual CGM that most of us have now. So if your son is looking at this to see if he wants the CGM, it won't even compare.

    ALSO ~ if at all possible, put some numbing cream on because the actual sensor insertion HURTS. I was amazed at how much larger the needle was for the 3 day unit vs the one for the CGM we have now.
     
  4. JacksonsMom

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    Why is is blind CGMS trial? I don't understand why you can't see the data like on the others.
     
  5. mischloss

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    EEEk! I won't tell him that, he might not even want to give it a try!

    Also: It is a blink sensor in that you have that "shell" looking device on the body but I don't think they have the pager device that you check the numbers against to bring home with you. So all it is doing is taking in the info without the ability for you to visually check the numbers. I know that I would love to see the trends as well. But then again, I don't want to "change" any eating or dosaging patterns either so that I can learn what we are not doing right so to speak. They also told us to keep accurate logs of what he is eating and when he is bolusing to compare it to the readings when they download it. That way they can see what the bg's are doing after he eats certain foods...(pizza would come to mind on that one!).

    If it can run for 4 days that would be ideal. Like you said a couple of weekdays thrown in with a weekend would be nice to see the results for.
     
  6. melissajm

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    Ben & Lilly are actually just finishing with this today. They had the sensor inserted Friday morning & wore it until this morning. We got 2 weekdays & 2 weekend days out of it which was nice. The sensor actually has a recorder bulit into it so it records all their data & MM will download it & send to their Dr. when I return it. Hopefully we will get some good info.!!
     
  7. ecs1516

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    Are you at Anderson's ? I heard they were encouraging a three day for all of their patients at least once a year. I think that is great.
    We're at Hansen's
    .
     
  8. 2ladybugs

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    One reason for the blind trial is so that they can get real data that has been "untouched" by the patient tweaking the insulin etc. They like it when you just do business as usual. You will also be asked to "forget" that it's there. One other thing that would help is to log what he does all day activity wise and also any stresses that he may experience whether an illness, lack of sleep, outbursts of any kind, etc. This is also used to interpret the data.

    When we did ours, the endo found out that the trampoline actually makes Isabella run high for up to 3 hours post jumping and then she comes down fast! So now we keep this in mind any time she decides to jump! ;)
     
  9. Darryl

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    Any CGM is better than no CGM, but the 3-day blinded concept is a bit unrealistic in
    terms of getting useful data.

    Most trends in BG are due to random changes that are not within your control. If the
    doctor relies on the blinded CGM data to make recommendations, you may be dissapointed
    with the outcome. Some examples:

    Let's say your child engages in an activity, the BG goes high afterwards. We've seen that
    too on our CGM - many times. The problem is that the same activity will be followed by a
    low BG just as often. Why? Because highs and lows are caused more commonly by random
    changes in basal need (due to growth or other random factors, etc.) than it is by any "activity".

    Another example - let's say that for all 3 nights, BG goes low at 2 AM. We've had hundreds
    of nights when BG goes low at 2 AM, maybe for a few days at a time, but also hundreds of
    nights when BG goes high at 2 AM. If we ever relied on the past 3 day's data to plan the
    next 3 days, our daughter would have made many trips to the hospital by now.

    So in other words, the blinded CGM is like having the doctor sit beside you and take notes
    for 3 days as you drive your car on the highway with your eyes closed, and then write down
    a prescription for the next year of driving in the form of "hit the gas at 8:01 AM and hit the
    brakes at 2:17 PM each day for a year".

    The whole point of a CGM is real-time control. That is, when BG goes high, you know it
    immediately, you see how steeply it is rising, and you also see the effect of your corrections.
    Same for lows. It is like being given permission by your doctor to open your eyes while
    driving, so you can simply "drive".

    You should do the 3-day blinded CGM if it is the only option available, however please
    recognize that the data will be interesting, and possibly enligtening in terms of foods that
    cause very high spikes, but it will not be anywhere near as useful as a 3-day trial of a real
    CGM when you can start to avoid highs and lows in the first place. And be careful to not
    rely too much on any basal-rate recommendations based on the 3-day data, because basals
    can change significantly by the hour, day, or week.

    Good luck!
     
  10. selketine

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    I think Darryl makes an excellent point. We seem to get weeks where William runs on the higher side, then back to the middle then the lower side, and etc. (no specific order or duration). We try to set his basal and bolus rates for a "middle ground" - if he had the CGMS during one of the higher or lower needs times I'm not sure what good the data would do us in hindsight.

    I hadn't thought of it this way - perhaps it takes long term CGMS use to actually tweak the basal/bolus rates but the primary good of it is the immediate feedback.

    We seem to be approved for the Navigator so I'm not CGMS savvy - I just thought that was a interesting point and it makes sense. Hopefully the 3 day will provide some useful data - good luck with it!:)
     
  11. mischloss

    mischloss Approved members

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    Yes, ecs, we are with Anderson, Carlucci, Rappaport, etc. :)

    I actuall was the one that brought up the whole 3-day thing. Since my son won't consider having a permanent CGMS attached at this point. I was hoping that at least with the 3 day trial we see some trends that we can adjust through basals etc. He does tend to have huge dawn phenomenon. We have tweaked between the doc office and at home a number of times to get those early morning basals into shape. But they last for a couple of weeks and then "booom" another high morning reading. Love those growth spurts. :rolleyes:
     
  12. ecs1516

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    It would be nice if you could restart it the sensor and go another 3 days. Sometimes it takes about a full week to get a good pattern.
     
  13. Darryl

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    This is actually a good reason to not try the blinded CGM.

    You may find that after trying a real CGM, your son asks (demands) to wear one 24/7
    (This is what we experienced - our daughter's absolute NO turned into her absolute
    insistence on wearing the CGM 24/7 within a matter of days after starting the trial).

    The blinded CGM will be, to your son, nothing other than a painful science experiment
    with no tangible benefits. However, if your son experiences or worries about lows or
    highs, and realizes that with a real (unblinded) CGM that he may not have to worry
    about those things, he may decide he wants the CGM. With a blinded CGM, no possibility
    that will happen.

    Since the physical parts of the CGM your son wears (the sensor, transmitter, are identical),
    if you're going to subject him to the insertion site, it's worth checking to see if you can
    get the real CGM rather than the blinded one. Note that your endo may resist because
    the endo wants to retain your dependence on them interpreting data for you, but the
    real CGM trials are availble and there is no good reason an endo should deny that.

    Check out this thread from last week...
    http://forums.childrenwithdiabetes.com/showthread.php?t=33917
     
    Last edited: Mar 11, 2009

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