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Ended our CGMS trial today

Discussion in 'Parents of Children with Type 1' started by Nancy in VA, Jan 25, 2008.

  1. Nancy in VA

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    I'm kinda missing the fact that I could just walk into her room and glance at the graph right now - I really don't want to do a finger stick because I KNOW I don't NEED to. This is the obsession that my endo was worried about.

    We had a tough trial because Emma was sick in the middle but we did notice a few trends that are are addressing:
    • We are doing a combo bolus for every breakfast - and we have increased the insulin at breakfast. The CDE thinks that our issues with the AM are bolus and not basal related. We are going to try to do a fasting basal test from waking up in the next week to try and get a good read on it.
    • She said we can't give her milk AND yogurt on the same day; and to try and cut out the cereal. She actually doesn't spike as much on waffles than she does with cereal. I told her this would be difficult, as we are telling a 2 year old she can't have what her siblings are having at the breakfast table. But her spikes in the AM are huge!
    • We need to just NOT give her
      Rice Krispie treats. We don't usually but we had some extras around the house this week, so she had a couple for snacks and she went through the roof with them! :)
    • We have a couple more time periods we are "monitoring" to see if a basal change is needed but there isn't quite enough of a pattern yet to see.

    I did discuss the fact that we are barely getting 2 days out of a site most of the time. She said that usually people have good luck with the Insets and that maybe she would do better with an angled-entry instead of the straight in. So, she gave me a couple of the new Inset-30 sets to try and see if they work for us.

    I told her I definitely want to do this again as the graphs are so valuable for us and the trending arrows, even if the #s aren't as accurate as we would like.
     
  2. Abby-Dabby-Doo

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    Nancy~ Honest opinion please...
    Would that device improve Emma's health and well being for the future? Did it help you catch lows? Would it help you keep her in better range?
     
  3. Nancy in VA

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    Well, it didn't catch the lowest low - a 41. It caught a couple of lows but honestly I would have caught them because they were at times I normally test anyway.

    I still think I want to pursue it but I would use it quite differently than we did for the trial- the way the alarms were set up is not an efficient use for us - I was getting 10-12 a day and only a couple were valuable.

    I do think it would help get her into range - we're not there yet. I do think watching the graph and being able to tweak and watch would be the most valuable use of it for us right now - and the alternative is a lot more finger sticks during those times of tweaking.

    So, I'm still back and forth about the value traded off with the downsides
     
  4. WestinsMom

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    Do you ever wonder if they set your settings that way just to make sure you were annoyed by it and wouldn't want one? :) (Just kidding)
     
  5. Mama2H

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    I was wondering the same thing :eek:
     
  6. Nancy in VA

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    I don't think so. If we had better settings, these alarms probably wouldn't be bad - 90 for low and 250 for high. I think I would set the high a good bit higher and spread out the frequency. The low I might tweak just a little, but that's pretty standard for how they set them - we weren't the only one to start a trial last Fri and the settings were the same for both of us.
     
  7. Rachel

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    It seems to me that the problem wasn't what the settings were but that they didn't let you change them when it would have made sense to.
     
  8. brad

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    Hi Nancy,

    thanks for the post and links to your trial blog. I love the idea of the CGMS but with our daughter's sugars being so variable as it stands due to grazing and breastfeeding, I am wondering if the CGMS alarms would be more of a hassel than anything for the reasons you've stated.

    Would this technology with an extra site, inflexible alarms, etc be better suited for an older child in your opinion (obvious benefits of knowing all trends aside)? Cadence is 14 months old.

    We are meeting with both the Animas and the Minimed reps on Monday to see their products. The Minimed rep is very excited about the exclusivity with CGM combined pumps and we hope not to be blinded by that selling feature forgoing the benefits of the animas pump, which I see that Emma is on. The animas are excited by their screen and lowest bolus volume, and non-proprietary infusion sets. Hard decision!

    thanks very much!
    brad.
     
  9. Nancy in VA

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    Brad: It is tough. I think with the alarm threshholds set at the right level, there is some value to the CGMS. I trialed the "stand alone" Guardian and it has some alarm features that the combined one doesn't - specifically predictive alarms. I actually think that, while annoying, those are the more valuable ones (at least predictive low ones). You have to be able to hear them or she has to be able to tell you they are going off, or it isn't going to do a lot of good. There was one time I walked by Emma in another room and it was doing the "you ignored me" alarm, which is REALLY LOUD AND OBNOXIOUS. Emma had just been playing through the alarms and not bothered to tell me. Doesn't do me a lot of good if she doesn't tell me, or I'm not around to hear them, and that's important with a little one.

    If you are using a different pump, you will have two pieces of electronics. Your pump and then the receiver for the CGMS. The nice thing is that I could put the receiver on the edge of her bed, right next to the baby monitor, and then I heard most of them that way. I "think" (but someone who has it would have to confirm) that if you have the Paradigm from Minimed, then you will only have one piece of electronics, but I can't confirm that for sure. I know they talk to eat other but I'm not sure of the exact set-up

    We love our Animas pump a lot. We use the small basals and like the screen SOOOO MUCH BETTER than the Minimed (after looking at the Minimed one this week for the Guardian, I confirmed it)

    The pump is going to be your biggest help to the grazing - the ability to eat and dose over and over is a huge benefit to the pump, regardless of which one.

    It is a second site. Our Endo said she would worry about running out of pump sites mainly because so far the only site we can use for her pump is her rear end. And, at most, I get 3 on a side before I have to switch sides. With having to change sites every 2 days, there is a good chance I would run out of sites on one side of her bottom before I would be ready to change out the CGMS sensor, which could introduce a problem.

    It its a tough decision. When we were looking at pumps, we looked solely at the "pumping" features and how they handled boluses and basals as a way to choose our pump. I do think the biggest "selling point" of the Minimed is the combined CGMS but we took that out of the equation for purposes of choosing a pump that fit our basal and bolus needs. We have used the lowest basal rate before and I think the bolus feature is intuitive - some say its a few more button pushes than the Minimed but I'm ok with the procedure - I think you have to adjust to whatever pump you choose.

    It is a tough decision. Good luck
     
  10. EmmasMom

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    Hi Brad, and welcome to the CWD forums! I just wanted to tell you that my daughter started pumping at 14 months and we did our first CGMS trial when she was 18 months. She has now been wearing her MM CGMS for over a year and it has been phenomenal for us.
    The technology is great and the alarms are actually very flexible when you are using the unit on your own. We adjust the settings regularly to suit our needs and the additional site really hasn't been too bad. We rotate from thighs to bottom to arms, (even on 2-3 year-old), and we have plenty of good locations for both of her sites.

    I think it's important to remember that it takes time to adjust to both pumps and cgm's so a week is often only enough time to get the idea (and to become frustrated ;)), but in a month it all makes sense and life is so much better!

    Good luck with your decision! BTW, we started with a MM pump from the beginning and it's always worked well for us.
     
  11. brad

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    Cool Thanks Amy. Boy what a decision :)

    I'm still leaning toward the Animas pump for the lower amounts of insulin, but the cgms is such a neat technology and I certainly see the benefits of it...IF it's accurate. The Animas rep maintains that the CGMS system is very inaccurate outside of normal ranges, up to 40% and only 20% accurate within normal ranges (which meets industry standards). If that is the case, I'm struggling with the value of that system, perhaps it is still in its infancy. The medtronics rep maintains that studies have shown a 96% accuracy rate on the CGMS and that reliance on finger pokes will become less as a result of it's accuracy (assuming proper calibration of course).

    Where I are coming from on this is that the cost of the CGMS system is very expensive and we are completely uninsured for anything diabetes related. All of this including the cost of the pump is coming out of pocket. If I am to increase my monthly expenditure in infusion sets, test strips, insulin, and CGM sensors to close to 1000/month vs. 700...it's got to be absolutely worthwhile.

    I'm tempted to let the other players introduce their CGM combination technologies over the next couple years and see what is the best system. I have a gut feeling (and nothing more) that the animas/dexcom combination will be extremely progressive.

    Amy and Nancy, would you say that the CGMS fell into that +/- 20% "acceptable" range (absurd that 20% is acceptable) or was it more variable than that?

    thanks again for the great information and the warm welcome,
    b.
     
  12. Nancy in VA

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    Brad:

    Its tough for me to make a determination of the 20% range at this point. We had trouble calibrating mainly because the times we should have been calibrating (before meals), she was either out of range or trending up or down, which means its not a good calibration. There were times that the CGMS and the finger stick were right on, and there were others where it was way off (it gave me a 90 with two down arrows and she was 130, for example)
     
  13. semperwife

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    Our son has been on the guardian since August and I would say that we are using it wisely to tweak patterns. Since using it his standard deviation has gone from 150+ to around 65 on a normal day. We have the alarms set for high : 210 and low: 70... this seems to work best for him. I do still get one high alarm a day but that is typically caused by him not pre-bolusing enough. If he has cereal he really needs to prebolus 30 minutes prior, if he is having oatmeal (gluten free oats) then he needs to pre-bolus 20 minutes prior so that his insulin is matching his food.

    I typically get around 3 weeks out of a sensor so they will last that long. That should significantly cut down on your costs.

    I wanted to wait until the Navigator was approved but I desperately needed something to help with the hypounawareness that was happening. Brandon would often go below 30 and not feel it. That does not happen anymore.

    I have neglected downloading it once a week like it was suggested... I usually only download once I see a specific period where he is always high or always low.

    The first day's numbers aren't the most accurate but by the 24-48 hour mark they are usually very accurate.
     

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