THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Wednesday, December 8, 2010

The Review: Our Dexcom Trial

The best you can hope for in this game are effective TOOLS to help you tame the beast. For some people insulin via syringe is an effective tool. For others, insulin pens or pumps. For some, logging every number, carb count, and dose by hand; while computerized logging systems work better for others.  Some people need a total carb number from the label; others need a glycemic index value. Some people use food scales; others don't see a need. Some people don't mind sugar tablets; others would rather be low than chew on one.

Get the drift?

First of all, Sugar did NOT want to try the CGM.  We went round and round in the car about putting on EMLA and she got REALLY worked up...if it wasn't for the fact that our Dexcom trial coincided with her regular A1c visit, I might have turned the car around.  Then I remembered that her friend, J, had JUST finished her Dexcom trial the day before.  After a text exchange with with J's mom, Sugar was on the phone to chat with J about her experience during the car ride.

J and Sugar have known each other for several years...first Sugar started the pump and then J was open to considering it.  First J switched from Cozmo to Animas and then Sugar was willing to consider the same switch (after Cozmo announced they were stopping production of their insulin pumps).  In my heart, I knew if anyone could calm Sugar's anxiety about trying the CGM again, J could.
J and Sugar, 2006
J and Sugar, 2008
J and Sugar, Spring 2010
J and Sugar, Summer 2010
Sugar on the phone with J
And she did!!!!  Thank you, J!

I had EMLA on the back of her arm, but our CDE explained that the sensor was only FDA approved for placement on the abdomen.  She wigged out a little when she heard that (she doesn't even like pump sites on her tummy), but did awesome.  I was very proud of her, because I know she was comparing this experience to our last CGM experience.

Anyway, the Dexcom unit itself was VERY easy to navigate.  Sugar (age 7 1/2 years) was able to enter all the data by herself.  She really enjoyed the independence and we enjoyed witnessing her take on the responsibility with such amazing confidence.

The first thing you should know about our trial is that I turned all the alarms OFF.  I couldn't handle them.  There's, like, an alarm for EVERYTHING:  "She's rising."  Thank you...yes, I know she has Type 1 Diabetes and her body does not produce insulin.  "She's over 300 now."  Thank you.  "She's dropping."  Thank you.  "She's 80."  Thank you.  "She's 55." Thank you.

ENOUGH ALREADY!  

Dexcom allows all of the alarms to be disabled, EXCEPT the low alarm that alerts when it senses a glucose level of 55.  

Fair enough. 

The second thing I should mention is that the sensor STAYED ON.  That's always a plus.  We didn't have the same luck when we tried the Navigator a couple years back.  I didn't put anything around the edges.  I didn't cover it.  I didn't sprinkle fairy dust on it.  The adhesive just worked without causing skin irritation.  Plain and simple....and pleasant :)

For the first 2 days, the sensor seemed off by 50+ points with intermittent periods of accuracy.  I was prepared for this after reading that sensors can take a couple days to "settle in" (Kudos to the DOC!!).  I tried to pay closer attention to the arrows during this time frame, and found them to be very accurate as far as predicting which direction her numbers were trending.  Once the sensor "settled", most of the finger sticks and CGM readings were within 10 - 20 points of each other.  Throughout our week long trial, the arrows remained consistently accurate.  

When her blood sugar topped 300, the number accuracy seemed to falter a bit.   When she was low, however, Dex was ON IT.  If I had to choose between one or the other, I'd choose to have a CGM on target with lows.

On one occasion, I quickly treated a fingerstick of 50-something during a birthday party at the park, and then let her run back to take her place in the game.  I ASSumed (dumb, I know) that the juice box would take care of it since she didn't have any IOB.  Five minutes later she was back, telling me that Dex wouldn't stop buzzing.  Fingerstick = 46.  Thanks, Dex.

I didn't feel as though we tested less...but I didn't feel we tested more either.  I also didn't feel as though I could sleep easier.  Admittedly, that could be a trust issue that develops over time. It took me awhile to trust her insulin pump as well.  That being said, there was one evening I fell asleep after bolusing for a late snack around 9 pm, and forgot to set an alarm.  The next thing I knew it was 5:30 am...I rushed to her room in a complete state of panic!!!! Fingerstick 112.  Dex 113 with a beautiful 6 hour flat line.   Nice.

I can't say I was surprised by anything I saw on her graphs.  I didn't *like* seeing the HUGE spikes, but it's not like I didn't know they existed.  There's something serene about living in the world of not being able to actually SEE those ugly mountains.  She seemed to spike to the 220's - 230's most of the time after eating.  When she spiked higher (sometimes MUCH higher), I almost wanted to throw up.  It wasn't pretty.

Unfortunately, I do feel as though my concern about Sugar discounting her low symptoms and, instead, relying on Dex to alert her was somewhat legitimate.  We seemed to have more lows than we've had in a long time.  I really have no idea why that would be, but, in the beginning, she seemed to catch them (as usual) in the 60's within seconds of being buzzed by Dex.  As the week went on, however, it seemed as though she wasn't catching them at all.

During the last 48 hours of our trial, she had lows to the 40's TWICE while at school and didn't acknowledge feeling anything at all until the nurse pointed out that Dex was consistent with her fingerstick.  After returning Dex to the endo's office, she dropped to THIRTY-EIGHT (38) before coming to tell me she thought she might need help, but wasn't sure.   This many lows, combined with this level of unawareness is VERY unusual for Sugar...makes me wonder....has she been randomly dropping all along, but we've been catching them with a snack before we realized it?  OR are these lows a residual effect from setting adjustments we made 2 weeks ago when she was growing...sometimes it's normal to need to back off after a major overhaul like the one we just had.  OR is it all just a crazy fluke because diabetes doesn't play fair?

To be objective, however, I want to reiterate that I **DID NOT** have the alarms turned on. For each of those lows, there would have been a predictive alarm alerting when she was at 80 (or 90 - or whatever we choose to set it at) and dropping.  I fully recognize that, had the alarm been activated, we probably would have caught the lows and corrected them sooner.

Anyway, we filled out the paperwork.  But....I'm not exactly sure where we're going with it. I do see the value it might offer when she's throwing random highs and I can tell a storm is stirring.  Until the other day, I completely trusted that Sugar was capable of catching her lows.  Today I don't have the same confidence.  If this unawareness doesn't correct itself soon, I'll be desperate to slap it back on with all the low the alarms set to blare!

At any rate, after removing the sensor, we were both curious as to what it looks like.  I took a couple pics, just in case you're curious too...


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15 comments:

  1. Great review. Interesting that they told you it wasn't approved for anywhere but stomachs, so that is where the site went. We have never put Dexie anywhere BUT the arm! LOL.

    And yes, there are LOTS of alarm settings. We don't use them all either. And you get used to them. The high one sounds different than the low or dropping one.

    I appreciate your objective review and I think it will help many other families as well!

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  2. Wow - GREAT review Wendy!!! We turned our alarms off, too (on our Medtronic CGM) because they were driving me INSANE! =) Of course, like Dex the low alarm remains, and thats the one we really NEED anyway!
    It sounds like the accuracy and the "settling in" is exactly like we have experienced as well.
    I love our CGMS - I am nervous going even a few hours without it.
    I will say that Sugar Boy has learned to catch lows while wearing Linkie.... of course when we started using Linkie he was too little to catch them, now he has actually caught them BEFORE Linkie has gotten to the alarm state. What I am trying to say is that there is a possibility that Sugar will adjust to having Dex AND adjust to catching her own lows again as well.
    More than anything, though - I am SO HAPPY FOR YOU that this was a positive experience! I know how nervous you were... and I know how bad the last one was.... so I am truly so happy that this time round was as good as it was. =)

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  3. Excellent review! I'd never heard about sensors needing time to "settle in." So glad you shared that! Very helpful!

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  4. Yeah, who wants to see those mountains anyway!?

    Maybe Sugar has just had so many lows lately that she wasnt feeling these lows until she was lower than norm?

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  5. Well...on the arm thing...they also aren't approved for kids our age. Our rep said it was A.O.K. to put it in the arm...especially after looking at Joe's abdomen. Interesting.

    I love the arrows. We too, OFF WITH THE ALARMS!!! Well except for the below 80 and the above 300...then we have them on.

    Great information Wendy.

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  6. You are so nice and patient with your 'Thank you's' after every alarm. I would be making up some new language if all the alarms were set to on . . . . so good for you for turning them off!

    We haven't spoken at all about a CGM, but we are also lucky Ellie seems in-tune to her highs and lows and goes to the nurse or comes to me when she is symptomatic. Who knows, though, how many she may be missing?! That is where I would love the data of a CGM.

    Great review, Wendy and I am very happy to hear this timwe around the experiment was a positive one. Btw, I LOVE the look on Sugar's face while she is studying the sensor! So sweet and inquisitive. Goergeous girl you have on your hands!

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  7. Good review. Dex gets more accurate as it learns your child's BS; took about a month or two for us to get more accurate readings from it. Re: the lows..... Unfortunately, I don't think you are having more lows than you had before.... just that you had no way of catching the lows because nobody is going to do fingersticks every half hour, nevermind every five minutes. We did have false lows with Dex sometimes, though. Glad you like Dex and even if your daughter does not agree to wear it full time, it's great to have Dex in a drawer for those times when BS gets really wonky.

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  8. Wow! What a good review! I want one SO BAD!!

    Matthew is so-so on the idea.

    I can tell you one thing....when he hits 16, there is NO WAY I'm going to let him drive a car without one!!

    Thanks for all the good info! : )

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  9. Hey Sweet thing! We use the arm too - I think a couple of people mentioned that above . . . it's the only place we use right now. I don't like Dex on the bum and we can't use Nate's tum yet!

    The only alarm I have on is the low - - - all others is just way too much information. When Nate gets older I will probably turn back on the high but until we get his spikes under control I just don't want to hear all of the beep, beep, beeping!!!

    Great review!!

    XOOX

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  10. I'm not a little kid, but I use my arm and it works great. I loved the part of the post about Sugar and J! HOW SWEET! What a blessing to have support like that! They are awesome kids! Just like their mamas!

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  11. Great review but one thing was missing! How was the sensor insertion? I've heard it hurts worse than the pump one. Were you able to get the EMLA on her tummy in enough time to make a difference or no?

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  12. Hey WendyP :)

    I haven't worn a Dex sensor, but I did try the Navigator. I didn't find the Navigator sensor uncomfortable at all, but Sugar swears to this day that it was torture.

    We didn't even attempt the EMLA because we were ready for insertion when we found out the arm wasn't an option for the trial.

    When I asked her about it, she told me that she didn't think it really felt the same as a pump site, but that it didn't feel worse either. She hardly winced and didn't seem bothered by it during the entire trial.

    In my opinion, the actual process of insertion was MUCH easier than the Navigator. Just wipe, allow to dry, apply the adhesive, makes sure all the edges are secure, and push the handle. Done.

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  13. Great post!
    I really do love the dexcom! The site is comfortable for me and those sensors get on my nerves. Especially at night!

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  14. I am so glad you gave it a shot! We've had our CGM for about 2 1/2 months and I have days I can't live without it and days I want to toss it out the window! Mostly, I love the low alarms. But Ally has never been good about catching her lows. I did worry that she would rely on it rather than feeling them...but actually I think it has worked the other way around. Maybe it has given her confidence that yep, what you are feeling does mean low!

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  15. So it's been 2 years since she's used the CGM. Would you recommend one for kids that are hypo unaware? Sarah is 3 and has no clue half the time. We usually catch it but We are going to be getting on a pump shortly and I fear that we won't catch what we should

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.