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For those with CGM....

Discussion in 'Parents of Children with Type 1' started by zoomom456, Apr 13, 2011.

  1. zoomom456

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    I hope you will answer a few of questions based on your experiences. I'm asking because we are considering one for DS. I've read the stats and looked through each companies website, so I know what they say. I would like to hear any personal experiences etc. Also, if it helps, we are leaning toward Dexcom.

    1) Do you sleep better/test less at night?

    2) Is this something that is easy to use? Could a lay person at a daycare who only has basic bolusing abilities with a pump use/understand a CGM?

    3)DS is going on 3, if started as toddler were sites an issue? ( keep in mind also on a pump)

    4) How reliable do you think CGM/sensor is?

    TIA
     
  2. Darryl

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    1) Do you sleep better/test less at night?

    I am awakened often to make small corrections, but sleep with less worry. I test her at bedtime, calibrate the CGM, and do not retest until morning unless there's reason to believe that the CGM data looks off. We have a long track record with the CGM, though. You would want to test once or twice overnight at the first with the CGM until you gain confidence in your techniques. Always remember to clean the finger with water before testing, and if the BG check and CGM don't agree, check again before recalibrating because in my experience the CGM is right more often than the BG meter is.

    2) Is this something that is easy to use? Could a lay person at a daycare who only has basic bolusing abilities with a pump use/understand a CGM?

    It's not hard, per se, but it takes consistent use, and a good intutive sense to interpret the CGM data. I'd probably insist on frequent BG checks during daycare, and rely on the CGM moreso when you're at home. But others here with kids that age may say differently.

    4) How reliable do you think CGM/sensor is?

    Not 100%, but a lot more reliable than luck which is all you have to rely on inbetween BG checks. Generally if a CGM says you're going up, you are going up, and if it says your're going low, you are going low. Often it's accurate within 10 points, other times within 20 or 30 points. Most importantly, when you get a number you see the trend. So you would not correct for a 200 dropping quickly, whereas with a BG check you might correct a 200 that is dropping quickly, leading to a severe low.
     
  3. hawkeyegirl

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    1) Do you sleep better/test less at night?

    Do I sleep better? Yes, because I can be about 99% sure that if there is no alarm, there's nothing going on that would cause me worry. There's none of that lying away worrying that a correction was too much or too little or wondering whether I should go test or not. When I sleep, I SLEEP.

    Do I test less at night? No. I probably test more at night, because we are able to keep him in a tighter range, so I frequently am responding to alarms.

    2) Is this something that is easy to use? Could a lay person at a daycare who only has basic bolusing abilities with a pump use/understand a CGM?

    Yes. The school doesn't really need to know much about the CGM except what the readings mean, that it isn't a replacement for finger pokes, and how to clear an alarm. Our school uses it to catch lows, and that's really all we ask of them. You'll use it for much more than that, but like Darryl said, that takes some practice.

    3)DS is going on 3, if started as toddler were sites an issue? ( keep in mind also on a pump)

    We started at age 4, so slightly older than a toddler. We use bottom exclusively for CGM and stomach for sites. Eventually, I hope to work arms into the rotation, but so far, we're okay with what we're doing.

    4) How reliable do you think CGM/sensor is?

    Very. It's not always perfect, but I don't really care if the sensor reads 132 and he's really 122 or vice-versa. It is very reliable at telling me when he goes too low or too high, and we rely on it heavily for that. It is also very reliable when it comes to the direction BG is trending, and we also rely heavily on it for that. Say you do a finger poke and it's 100. Pretty good number, right? Well, not necessarily. You don't know if it's 100 holding steady, 100 heading up very fast or 100 going down very fast. You would treat all three situations very differently, and the CGM lets you do that accurately, because you can see which direction BG is going. It's virtually 100% accurate in that regard.

    It's still somewhat quirky technology, but invaluable. We wouldn't be without it.
     
  4. Flutterby

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    Answers in blue above.:cwds:
     
  5. chbarnes

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    We use the Dexcom.
    1 We sleep with less worry and almost never do a fingerstick at night. However, we could easily sleep through an alarm, so we set our alarm for 12:30 and 2:00 each night and look at the Dex at those times. Last night he was in the upper 40s at 12:30, it usually takes about an hour to wake him enough for him to cooperate, so we lowered his basal. He was above 60 in 15 minutes and above 90 in 30 minutes. We just watched the Dexcom.
    2 Dexcom is far easier to use than a pump.

    3 My son was 11 at diagnosis, but I can imagine it is harder to find enough sites in a 3 yo.
     
    Last edited: Apr 13, 2011
  6. TheFormerLantusFiend

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    1. Not really, because I sleep through alarms.

    2. For the most part, yes. But I'd want to make sure it was calibrated before giving it to them so that it doesn't need to be calibrated during the daycare period (or in my actual cases, while I'm anesthetized).

    4. For me, 90% of the time it's within 5% of my meter. Very accurate. But that other 10% of the time, it can be really off, particularly at the blood sugar extremes. For the most part, I can tell if it's being accurate or not.
    Actually though, reliable includes another question. Neither one will reliably show a number. The Dexcom sometimes shows ??? instead of a number. The minimed display will say out of range even though the monitor is right next to the sensor, sometimes.
    Anyways, they're both pretty good, in my experience Dexcom more so than Guardian particularly if I use arm sites and don't try to squeeze every last day out of the sensors.
     
  7. chbarnes

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    Whoops forgot to answer 4
    The Dexcom can be way off for the first day and so so on the second day. After that it is pretty reliable. Even when it is off it usually gives some useful info, if it says you are high, you probably are, just not as high as it says.
     
  8. momof2kids

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    We just started using the Dexcom about a week and a half ago. It's great when it's working and frustrating when it isn't.

    It is definitely NOT reliable. We are still trying to decide if we'll keep it or return it because of this. I suspect we'll keep it simply because it is so valuable when it is working. The first sensor gave us about 24 hrs of good data before it started acting wacky and eventually quit giving us anything. We ended up getting that one replaced. The second one worked great, but stopped working early (6 days instead of 7) - I think because it was knocked loose from her skin. After a 2am fingerstick and calibration, we got an alarm at 3am this morning saying she was below 80. She was above 100. We've had it wake us for an incorrect low alarm 2 times so far. (I'll accept this if it also wakes us for actual lows!) The 3rd sensor stopped working just 30 hrs after starting. It was working great but then just quit. I don't know why yet.

    It is definitely simple to use, but as Darryl says, you need to understand the data you are looking at, including the inaccuracies, etc.

    On the good side: The Dex has helped us prevent 4 lows in the past 1 1/2 weeks. It has also helped me see that she was coming down from a high so that I didn't need to correct with insulin.

    Having the Dex really hasn't changed how well we sleep yet. We still get up 1/night at 2 am to check. BUT she is still honeymooning and on MDI so she is still quite steady over night and we don't have to worry about pump sites going bad.

    There is a 30 day money back guarantee with the Dex, so you can try it for yourself and still return it if you are not happy (sensors are not returnable).
     
  9. Gracie'sMom

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    1) Do you sleep better/test less at night? We test more at night now, because we know that she is out of range, before CGMS we were not aware how often she was out of range.

    2) Is this something that is easy to use? Could a lay person at a daycare who only has basic bolusing abilities with a pump use/understand a CGM? We use dexcom, and with that you only have to enter BG's 2x/day and it still gives you readings if you don't. It is easy enough for them to read.

    3)DS is going on 3, if started as toddler were sites an issue? ( keep in mind also on a pump) My dd was 8.5 when we started.

    4) How reliable do you think CGM/sensor is?
    Generally very reliable, with in 10-20 points. The best part is that the "trends" are reliable, by this I mean arrows saying if she's dropping or rising, allowing you to decide how aggressive to bolus.
     
  10. Kayeecee

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    1) Do you sleep better/test less at night? Yes. We almost never do a fingerstick overnight and rely on the readings that the Dex gives us. So as not to miss any alarms, we have a baby monitor in her room and keep the Dex receiver positioned such that we can (usually) hear the first or second alarm.

    2) Is this something that is easy to use? Could a lay person at a daycare who only has basic bolusing abilities with a pump use/understand a CGM? Yes. If your daytime caregivers are already testing blood sugar, it is quite easy to input those numbers into the Dex if it is off. At least I would hope that the caregivers had enough sense to be able to do that if they are otherwise managing other aspects of my child's care.

    3)DS is going on 3, if started as toddler were sites an issue? ( keep in mind also on a pump) We started as a 7 year old in October 2009, so I'm not much help. I'm sorry.

    4) How reliable do you think CGM/sensor is? I concur with previous posters that most times the Dex is very accurate, meaning within 10 points of the meter. I will add that it is often highly inaccurate at both ends of the spectrum and I have many times been awakened by a low (70) alarm when she is in fact in the 90's if I do a fingerstick. For that reason, I rarely will correct lows unless the Dex tells me she's 55 or below. However, the trend arrows are accurate and those are valuable when trying to figure out what to do in the middle of the night. And after 18 months of this new life with diabetes, I realize that if she's a little low for a short period of time, it's OK. For instance, if she's in the 60's around 5:30 a.m. and I know she's getting up in 30 minutes, I'm not going to wake her up and treat her low because I can see from the Dex that she's not dropping fast.

    Good luck. We would never go back.
     
  11. chbarnes

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    I would add, the available systems work in completely different ways. There are examples of kids for whom either system just didn't work very well, and some people get better than expected results. The point is, don't give up. If one system doesn't work, try the other. For accuracy, the Navigator was the best of all --- but it was awful in so many other ways. New, more accurate sensors are on their way for each system.
     
  12. zoomom456

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    Thanks again for all of your repiles! Just a FYI, the daycare question was asked because we had to push REALLY hard to get the daycare to use his pump. It took about 6 months, but now his daycare agrees that the pump is better for everyone concerned. I really just want the daycare to be able to clear an alarm and have a warning he might go low. So I'm thinking this could work! It would be nice to know if a BG is rapidly dropping. Last night we had a 184 at 6:30 and I left it since DS was running around, by 7:25 he was 55. I would also like to see his nightime trends, DH and I are so tired we are sleeping through our alarm clocks some nights.
     
  13. momof2kids

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    I forgot to mention - just make sure that the daycare staff understand that they still need to look at the child, not just the CGM. Finger sticks are still required because the CGM can be off quite a bit sometimes.
     
  14. zoomom456

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    I will! They already test him 3-4 times daily while he is there so i think it will work out ok.
     
  15. momof2kids

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    Great! That's been a bit of concern for us when DD starts at her new school - don't want anyone to assume that the Dex is correct and skip a finger stick to confirm. :)
     
  16. joy orz

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    I echo what everyone else already said but wanted to add a few things.

    MANY more of your friends will be willing to babysit once you have a CGM :D And you will feel more comfortable letting them. :p It makes life so much easier.

    Though the beginning can be a rough start. It's a quirky, frustrating piece of technology. Sensors will fail, alarms will beep, you'll be overwhelmed with the data and then find big surprises about highs and lows you didn't know were happening. Stick with it. The longer you do it, the better you will get at inserstions and calibrations, THUS YOUR DATA WILL BE FAR MORE ACCURATE.

    Hang in there and don't really throw it against the wall when it alarms three times in one night. Soon, you'll be gladly sending your child off on playdates confident that the parent can pop in a juice box if an alarm goes off. :D

    (Ava went on the ping at two and the DEX at three, we use toosh for pump sites, back of arms for sensor sites with no problems)
     
  17. mmgirls

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    .........................MTS
     
  18. mmgirls

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    Just wanted to add that it gives you more comfort and ease when the kids are running around outside or at a freinds house to just ask, what is your number and they tell you the CGM number and then ask what is your arrow doing?

    We live on a court and are outside allot and the kids end up at the neighbors, it is so much easier, when they have been playing and she calls from the freinds house asking to eat or drink something, what is your number and what is your arrow doing?

    I can say yes or I will be down in a minute to give you insulin.

    It is not perfect, but BG testing is not Either.
     
  19. sage68

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    1) Do you sleep better/test less at night?

    Same as what most everyone else has stated, I tend to test more at night because I have the CGM to help me. I use it to know what direction the girls' BG is heading as well as how fast they are going there. I feel a lot safer correcting with the CGM, so I am more apt to do so at night than I was pre-CGM.

    2) Is this something that is easy to use? Could a lay person at a daycare who only has basic bolusing abilities with a pump use/understand a CGM?

    Completely! I have Elly in preschool 2 mornings a week and the daycare/school is great with it. They still use finger pokes but mostly just use the CGM to see what direction Elly's BG is heading.

    3)DS is going on 3, if started as toddler were sites an issue? ( keep in mind also on a pump)

    My girls are almost 5 and 2. With my 5 year old, I use bum and arms with no issues. My 2 year old is harder. Her pump sites are exclusively on her bum and hips, so I use her arms exclusively for the CGM. I like the CGM on her bum but the couple times I did that, I ran into huge problems when she had a messy diaper (it was horrible!!!). So, yes, sites are definitely an issue for the littler ones.

    4) How reliable do you think CGM/sensor is?

    This is just my opinion, as I know a lot of people love Dex, but I LOVE LOVE LOVE the Guardian! We got Dex originally because my girls have the Ping and had nothing but problems with it. My girls developed a pretty severe adhesive allergy to it and we finally switched them to MM and have had no problems since. I have found, IMO, that the Guardian is more reliable than Dex. I also LOVE that the Guardian has the ability to predict a low. It has caught several lows in both girls before they were dangerously low. LOVE that feature. I also like the the Guardian's ranges can be changed depending on the time of day. The highest I can set Dex for a low is 100, and our endo wants Anne to be no lower than 120 right now, so with Guardian I am able to set it at 120 as a low (and 150 for a low at night).

    I never want to go back to life without the CGM. I still get up 2-3 times a night to check the girls, but overall, I don't poke them as often as I used to and it is just a huge relief to me to have it. I am now more panicky when I don't have the girls on it!
     
  20. swellman

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    Two different questions ... yes and, mostly no but sometimes yes.

    Use yes ... fully understand? That's a big question ... I feel very qualified having a chemistry degree and professional experience in computer programming but I still look at the CGM and go "Whaaaa?" It's not the CGM that's hard to understand ... it's the diabetes.

    Didn't start until 5.

    Now that I know when a good sensor is good and a bad one is bad I would say it's very helpful. We do NOT use it in place of a finger stick but we absolutely use it to make decisions about spikes and falls.
     

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