Monday, January 23, 2012

CGM: Quality sleep, not quantity sleep.


(Before you read this you should know, I'm not a doctor.  I'm just a mom relating her personal experiences with the CGM. If you have any questions, call your doctor, your CDE, or contact Medtronic directly.)

I'm a fan of the CGM, but it has a lot of issues...not the least of which is it's always on, and it always has something to say.

Always on means constant information shooting our way. I don't know about you, but I have a love/hate relationship with information. On one hand, information is power. On the other hand, "SHUT UP I DON'T WANT INFORMATION ANYMORE!! MY BRAIN IS GOING TO EXPLODE!!!

We've had good runs and bad runs with the CGM, there are so many variables it is hard to distinguish which direction it will all go from the onset of a new sensor.

Before I get more in depth, I'm going to show you the technical side of the Medtronic CGM. Because you asked, and because it is always best to start from the ground up.

This is the needle that we insert the sensor with. (Don't worry, after inserted with a long rocket type device, the needle is pulled out.)


We insert the sensor into the child/lion and then we wait 20 minutes for the wire inside to "wet."  (I know that I stupidly put the CGM into the place that would be your child's belly button.  This is not accurate.  The CGM does NOT go in the belly button, lol! It will go on the side of his/her tummy or hips.)


Then we attach the actual transmitter and wait a couple hours for the CGM to ask for its first BG.


Here is a picture of what a pump site and a sensor looks like together.  We usually use some IV 3000 tape to secure the CGM.


After we enter the first BG the sensor will begin transmitting numbers to the pump. (There is no giant receiver like on the Dexcom, it is all integrated.) On the pump we will be able to see graphs, numbers and arrows indicting whether BG's are going up or down. Is this number accurate? That depends on many variables. We find that once in awhile we get a good box of sensors and numbers are very close. Other times we get a not so good box and the numbers just don't ever line up. (This is a personal theory, and I'm stickin to it.)  We have also found that the CGM doesn't like a lot of giant swings.  It finds it hard to keep up if you will, and accuracy can be spotty. I depend mostly on the directional arrows with this device. Because it is measuring values from the subcutaneous fluid, and not actual blood, the numbers will often vary.  (Directional arrows tell you if the blood sugar is trending up, or down.)  Sometimes though the stars align and everything is spot on.  When B wore it last week, this was the case. When we put it on L he bled too much and the sensor just was never spot on. I think the unpredictability of this device is the biggest frustration. If every time we got the same accuracy and results, the CGM would be our best friend. But I admit the unpredictability could be attributed to user error. I error a lot. I'm only human.

Does it hurt going in? I'm sure it does. But we put numbing cream on the boys twenty minutes before hand, and hand to heaven they do not feel the insertion. Because L was bleeding so profusely we had to put his CGM in a couple times. He looked away and honestly asked if we had done it yet...after it was in. He is our most sensitive child. One bad experience and he will not try anything again "ever!" The fact that he let us insert it again is very telling that the cream works. If you don't have access to numbing cream, (it is expensive,) I've heard others had good results with using ice to numb beforehand, and even read on facebook yesterday that someone found a product over the counter at Walmart called Dermoplast numbing spray. Worth a try.

Calibrating is an important task when using the CGM. We calibrate 3 times a day. When they wake up, when they get home from school, and at the 2am check. Calibrate means you put in the blood sugar number and answer "yes" to a question that pops up, saying you want the CGM to use this number as a new baseline. The numbers will jump off from that point, rather than the number it was on. Often the numbers can be very close...but calibration is not negotiable, as the alarms will unmercifully tell you.

One of the cool features on the Medtronic CGM include predictive alerts. If you choose to turn this option on, the pump will alarm when your child is at a certain number and the arrow is pointed down, or up. This is genius. Saved B from a couple lows...and a high too. There are a lot of alarms. You need to program the parameters in the pump just right as to not drive you or your child crazy. "Lost sensor," "BG Now," "Predicted high," "predictive low." "Low," "Sensor ending," etc...

How long does a sensor last? The FDA approves only for three days. The FDA doesn't have to wear it though and reinsert it into their child. I have heard rumors of people using it for much longer, restarting the old sensor as a new one and beating the system. I'm admitting to nothing...but it is best to ask your doctor what they think. (I'm not a doctor, btw.  Although I play one in real life...)

Do my kids "like" wearing it. No. Does it bother them. Not really. They wear it and don't complain at all. Just for some reason they resist putting it on again after it is off. Obviously freedom is a huge motivator. If your child is a light sleeper and wakes up for all the alarms, that isn't fun either. My boys don't wake up...but on bad nights, it does mess with their sleep patterns.

Which leads me to my last topic. Many people want these kind of devices so they can, "finally get some sleep already!" Does the CGM help parents sleep more? No. Does the CGM help make the sleep you do get become a more quality, deeper sleep? Yes. Having this tool as a backup puts my mind at rest. But there are nights when the alarms keep me up. Without the mySentry, I could never really hear the alarms at night. Now that I do, I'm not sleeping more...but I am sleeping better.  Some of my friends use baby monitors to hear the alarms at night.  Hey, whatever works!

Quality sleep...not quantity sleep.  That is the message I want to send out today.  The CGM can be annoying at times, but it is such a valuable tool that often the good outweighs the bad.  Every child is different...will your child tolerate it?  I can't tell you that.  Your child's diabetes my vary...and their tolerance too.



17 comments:

  1. I've been CGM'ing for almost three months now, and this post is just great. As an adult, I just insert the sensor without any numbing, and it's really not painful, so you shouldn't worry. It's definitely fickle - I've also had too much bleeding and off numbers - but in general it does make me feel like I have a lot more control over things. Thanks for posting!

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    1. You are so right! J has had it inserted without the cream. (I forgot to post that.) It doesn't bother him...but he has been around this block for 13 years now. It all depends on the kid/adult. I think the sight of the needle is what makes it all worse. I try not to let the boys look at it, it works better for us that way.

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  2. You are very right. Even with the CGM and now the MySentry I get up at night. I probably always will. Even when I get a nice steady 110 on the graph, I have to check it at least once during the night just to make sure it is accurate. The CGM does sometimes increase the checks based on how tight you have the alarms. Brianna doesn't use anything, she actually says the Silhouettes hurt more then the CGM sites. She is really bothered though, those two-three seconds the needle is in her, she says it feels weird.
    Information sometimes is annoying like when you know they are going to go high and it reminds you yup double arrows up.
    I am really happy with MM CGM, the best part for us is that she doesn't have to carry around a separate device. :)

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    1. Thanks for your comment Kelly! I know it will help put more minds at ease!

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  3. Great, Great, valuable information to have as we someday may venture into the CGM world with our son,Wes. Thank you so much for your awesome and honest insight!

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  4. Thank you Merri, lots of great info!

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  5. I too dislike the unpredictability of the CGM's and hated using the sof sensors(with the 10 foot needle!! - well it seemed like it to me!) We now use the Enlite sensors which are a dream to put in but as yet I am to be convinced that this is a tool I would like Aleksi to wear 24/7. The issues I have are some skin irritation, not good when working with limited space( namely a small bottom!),accuracy especially if running high or very low and also just the fact that there is another piece of hardware attached to a typically active 8 year old and yes they do get ripped out quite easily. We currently use one sensor a month and with luck we get 6 days data - good for trend spotting and also with the pump we use, it will go into low suspend mode - ie stop insulin delivery. I am very interested to here about the Mysentry and am hoping it may head East sometime soon. Thanks Meri!

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    1. I want my readers to know that the Enlite sensors are not approved for use in the US yet, and the low glucose suspend, which turns off the pump for a period to avoid bad lows, is also...not approved in the US...yet! Everyone uses this tool differently. Some use it everyday with out fail. Some, like FeltFinland, once a month. Others, just when basals need to be tweaked. My kids never have had sensitivity to the adhesive...others have. Just another reason why one way, never fits all.

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    2. Sorry if I put a spanner in the works Meri - I didn't fully appreciate what had or hadn't been approved in the US. I am just grateful we have access to the technology we have and am ever hopeful things will only continue to improve and progress.
      Amanda

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    3. Amanda, we look forward to the day when the technology is approved in our neck of the woods! I'm thankful you have it now. We'll get it her too...one day!

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  6. I wear my cgm all the time. But the other night I could tell the last insert was on its last leg so i took it out. I decided that I didn't want to wake up in two hours to calibrate so i didn't put it on until the next day...but i got the best nights sleep with no alarms waking me up all night long! Sometimes you just need a break! Love it though lol!

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  7. Meri this is a great post about the MM CGM. I was nodding through most of it, because it is so much like I feel about it. Love the information...and sometimes hate it too! But overall, I think we have much better numbers when we use it. Thanks for sharing your experiences!!

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  8. Great pictures! Love the Lenny cameo. :D

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  9. nice overview, meri! :)

    i totally understand what you mean. i use medtronic cgm, and wear it 24-7. i have pretty decent luck with accuracy, thankfully, though it's far from perfect.

    totally a love-hate relationship. an alarmless night it cause for celebration! :)

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  10. Quality sleep, not quantity, sums it up! I'll take it. :)

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  11. dude, your kids' experience/opinion about the mm cgm is almost identical to my kid's (though she insists on wearing EMLA cream for an hour b/c she feels it takes that long for the numbing to kick in).

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  12. My endo told me to reuse the MM CGM sensors up to one time - tell the pump it's a new sensor when it's not.

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