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Scared off

Discussion in 'Parents of Children with Type 1' started by DsMom, Jul 23, 2011.

  1. DsMom

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    A few weeks ago, I was all set to order a CGM (Dex) for my son. Had done research, talked to his endo, got the brochure and papers to start the process, and was ready to go. My son has even asked for a CGM, and there is so much enthusiasm on this forum from those who use CGMs.

    Now...I'm nervous. My FIL being very ill in the hospital caused me to forget the CGM for a while and, now that I've come back to thinking about it again...I'm remembering recent posts about the Dex not always working reliably at night or even during the day. I guess I was naive to think we would be getting a device that was as reliable as the pump...sounds like CGMs can be hit or miss sometimes. I'm also leery about putting the sensor site in my son's tummy. He has ZERO fat there...and pump sites in his tummy have had nothing but problems...we only use his butt now. If I need to pinch anything to get a sensor site in...I won't be able to...I can barely pinch skin on him there.

    Can some of you share your feelings about the reliability of CGMs...particularly the Dex?? How often are you getting ???s or whatever the message is for it not working? If I'm going to be poking my son yet again, I really want it to be for something that works most of the time...especially at night.
     
  2. fredntan2

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    Most of these devices come with 30 day trial period. Ask first though. Can't hurt to try, especially if your insurance company will pay
     
  3. Melissata

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    First off, I don't have a little one, and it does seem like the younger kids have more problems with a CGM. In my opinion, you have nothing to lose and EVERYTHING to gain. You have 30 days to decide if you like it or not. You should know within a couple of days if it is right for you. The Dexcom is very easy to learn compared to the others. Instead of only getting glimpses of what is going on all day, you have a really good idea all of the time. It is life changing for most people, and lots say that they would give up their pumps before they would give up the CGM. It catches highs before they get too high and lows much sooner than we ever would have known. It is also very valuable for knowing which foods spike them and working through that. It can be as simple as bolusing earlier for some foods, and this is the way to figure all of that out without so many blood tests. I know that I am not nearly as stressed as I used to be about my daughter's blood sugars, especially at night when she tend to have lows and never wakes up to them without the CGM. I used to actually feel myself holding my breathe while she tested at times, because I never knew how high or low she would be. Now she gets an alarm telling her if she is getting out of her range and we can act sooner to fix things.
    Both my son and daughter use a CGM 24/7 and have for close to 3 years now. My son uses the Navigator and daughter changed from that to the Dex and we are very happy with the Dex for her. Because of the comments here about ??? and such we chose to do a trial of the Dex and her Navigator broke just before that trial. I don't think that they offer trials any longer and I found myself wishing that I had just gone ahead and put it through insurance so that we didn't have to wait. We were lucky that we were able to keep the trial Dex for 2 weeks while waiting.
     
  4. selketine

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    I agree there is nothing to lose if your insurance covers most of the expense or all of the expense. If you are paying a lot - I can understand more hesitation in throwing money into something that might not work for you.

    We still use a Navigator but Dex would be our choice otherwise. EVERY cgms system has its flaws at this point and it does take weeks - if not months - to really get into the groove of using it and eliminate problems.
     
  5. Lisa P.

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    Whenever CGM technology comes up, especially in the context of younger kids, if I chime in I always want to make sure people know these are not perfect devices. That's because our endo discouraged CGM use because he said they were not accurate yet for little kids, and I suspect -- he never said -- that what he ran into is what I have seen elsewhere, people think you can plug it in and you're done and know everything going on inside all the time, and when they find out it's not true they scrap the thing before they see what it CAN do.

    But here's what it can do -- it has cut our finger sticks from average of 12 to 15 a day down to probably 7. It gives me a picture of her day or the last few hours. It means I can let her fall asleep while I'm driving the car because I know she's in range, instead of pulling over and testing her in a panic. It means that when she gets pale and shaky instead of shoving glucose tabs down her throat in case it's a bad low and then testing only to find out she's actually over 350 instead and I've just gone the wrong direction, I can know she's high instead of low. It means the dexcom will often alarm me when I didn't suspect she was going low, and I can treat before I have to overtreat because she's symptomatic. It means if I see she's 250 and I suspect she's going up I can get backup from the arrows that, yes, the trend is up so I can take the chance of correcting instead of waiting until she's 350 (after a finger test, of course). It means that at night I can take a glance at the thing every few hours and see what's up, instead of having to rouse myself entirely out of sleep and do a full check.

    I would give up the pump in a heartbeat over the Dexcom. I don't know how it compares to other CGM tech, of course. It is a flawed instrument, but it is incredibly, incredibly useful. If you are looking to make the care you practice easier on everyone, it can get you there. If you are looking to bump up the level of diligence, it can get you there. If you are looking to take more chances with kids being in the care of others, or looking to be able to relax a bit, or looking to teach a kid to transition to observing his own bg's and how he feels, or wanting to track trends, it's great.

    I highly recommend them, but I always disclaim, it's just a tool. It's like using a chainsaw over a hand saw; you still have to know how to use it properly and it is true that if you use it wrong, you can get into bigger trouble faster with a chainsaw than with a hand saw (that's why we don't correct based on the CGM, ever -- we'll bolus for food if we think it's right, but we have had 300+ on the CGM when her bg was under 100). But if you have a big job to do, which we do, the chainsaw is the way to go.

    Best to you in your decision!
     
  6. Lance

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    Yep. We've had this discussion at our house. Dex is an invaluable tool - not perfect, but far better than having nothing. The few times we see ??? remind us how much we've come to rely on Dex.
     
  7. hawkeyegirl

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    I would say that our CGM works extremely well more than 95% of the time. Because it works so well so often, it makes it even more annoying when it doesn't.

    CGM is lifechanging. We had an unexpected sensor change the other night, and had to go overnight without it. I was up every hour doing a finger poke because I now KNOW what goes on overnight, and do not feel safe when he isn't wearing it. It is that good.

    Try it. If it doesn't work for you, put it back in the box. But you have nothing to lose by giving it a shot.
     
  8. Michelle'sMom

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    I totally agree.

    An excellent analogy. :) Trying to stay on top of the hormone swings of a 13 yr old girl calls for a chainsaw.

    For all of the reasons Lisa mentioned in her post, & also the need for frequent basal changes in our house, I LOVE the Dex! We've taken breaks, both by choice & unavoidable (waiting on the replacement receiver, a transmitter accidentally thrown away), & we were back to nights of little sleep with lots of worry & constant fingersticks. No thanks.
     
  9. chbarnes

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    We love the Dex and would do without a lot of other things to have it. For us, it is pretty dependable after the second day. We start getting ??? after about 2 weeks and know it is time to change his sensor. Over time you just develop an intuitive understanding of the significance of the numbers.

    On the other hand, think of the trust you are placing in static BG measurements. Would you really give a correction for that BG of 200 if you knew it was dropping rapidly?

    We can check our son in the night without a fingerstick. That alone is worth it.
     
  10. Lisa P.

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    I really, really, really find this to be true.
     
  11. lisamustac

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    Everything Lisa said :)
     
  12. DsMom

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    Wow. This is incredibly well said and really just what I needed to know. Thank you!

    Does anyone have experience with CGMs in really skinny kids?? This is my other main concern...I am worried that I will have problems like I did when trying to put his pump site in his tummy...just nowhere to pinch an inch!
     
  13. TheFormerLantusFiend

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    I'm not a kid but I am really skinny and there's nowhere on my body you could pinch an inch. So far that hasn't been a problem. My sensors have worked best on my arms but have also worked on my abdomen. All of my sensor wires come out bent- I wonder if they bend instead of going into muscle? I don't know how, I just know they work.
     
  14. nanhsot

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    This is our first illness on Dex and I can't tell you how much peace of mind it has given me. I'm able to check him at any time and while the number may not be PERFECT, quite frankly neither is a meter reading! Repeat 3 meter readings within a few minutes (and to be more clear, compare to other meters) and see what I mean, even that technology is flawed. What is invaluable has been trending, when he's been needing to take massive amounts of insulin we can easily see if he's still trending up or if he's beginning to drop. That's been great, particularly at night.

    Trend arrows and overall graphs are what help most, not the immediate number. Though the number does often prompt a meter test when one might not have been thought of. It has significantly reduced meter readings in our home, though that's probably a con not a pro, my son relies on it a bit too much sometimes I think.

    Is it perfect technology? Well, honestly I think it's at least as perfect as the pump for us, as we have pump issues just as often as we have CGM issues.

    Both are imperfect. Both are invaluable.

    To answer specifics, we rarely get ??? unless the BG is changing rapidly. We get about 10 days on a sensor or more, and the longer it stays in the better it does. My son is not thin but works out a ton and is very muscular, no fat, lots of muscle. He prefers the thigh but I've found that to be odd amongst others here!
     
  15. 2type1s

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    I love the Dex for both my girls. I WOULD NOT be without it. It has changed our lives for the better for both girls : )
     
  16. *Shannon

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    Janie uses a pump and the Dex. Both the infusion set and Dex sensor are inserted into her bottom, one device on each cheek. Her stomach area is very slim but, luckily, my girl has a bottom. We tell her it was specifically designed to handle diabetes hardware. :)

    I think we are going to have to start using stomach infusion sites soon, but the Dex sensor will stay in her bottom.

    We all love the magic machine... I say go for it.
     
  17. emilyblake

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    I agree with most if not of all of what people have written here.

    I would give up the pump before the Dexcom. We get ??? when the sensor is at its life end (usually > 2 weeks or so).

    Our daughter is a skinny minnie and has no fat anywhere - we use back of the arms in the tricep area.

    The dexcom has changed our life in so many ways just like the others have written. Many times Lila has looked so withered and droopy and complained of feeling low only to view Dexcom and see that she is 250. I would say that for us, it has caused us to do more finger sticks than we did pre-Dex. It has alerted us to giant spikes and undetected lows. It is also amazing to see how the food causes the bg to behave (after pizza for example!). Now we check more often - and the trends are the other huge benefit. I think the numbers are normally as accurate as the bg meters are - not always agreeing with them, but probably as accurate unless needing a calibration.

    I also feel like the Dexcom helps us overnight and while she is at school or doing sports etc. When we change the sensor and go overnight without it (or get random ??? when the sensor is old - we also miss it. We are spoiled.

    Our endo at first was saying that we didn't really need it b/c our daughter's A1C was in range for her age. I asked again a few months later. That time her reply was that we could try it if we wanted and she could wear it for a few weeks. (My intention all along was to wear it constantly)

    She also said the people who want it are never the ones who need it (I understand what she means but I feel like I really need it!)

    good luck with your decision. I also give it a YES vote!
     
  18. Seans Mom

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    We've had Dex for almost 2 yrs. now and I would be absolutely lost without it. I could go back to shots easier than doing without the cgms. Sean on the other hand would not. ;)
    We use his tush exclusively for the cgms.

    We get ???'s at times and at times we let it go out of range for awhile. It's still way more info than we ever had on 10-12 fingersticks per day.
     

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