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.
Dexcom allows all of the alarms to be disabled, EXCEPT the low alarm that alerts when it senses a glucose level of 55.
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...
Here's some other CGM posts from around the DOC: