What has been going on lately?

I never finished my post after Angelina’s cold.  The end of that long, convoluted story (when aren’t my stories long and convoluted?) was that we got her on the medtronic CGM (continuous glucose monitor) starting November 5th.  Insertion was easy, and after the first 24 hours on it a lot of the readings were pretty close to her meter readings.  Of course, the CGM reads interstitial fluid and not blood so it’s considered accurate if it’s within a 20% margin.  Then, we hit day 5 of a sensor that should last 6 days and our entire CGM experience went to Hell in a handbasket.  We set minimal alarms at training so that it wouldn’t be alarming all the time, which can be pretty frustrating when you’re getting used to a new device.  Well, at the start of Day 5 (and by start, I mean 5am) we were getting alarms left and right.  It alarmed that her blood sugar was over 300.  Then it said her blood sugar was going low, then again that it was over 300.  Obviously, her blood sugar wasn’t’ fluctuating that much that quickly (this was all within about an hour) so I tried to restart the sensor as I had seen mentioned in one of the T1 groups that I frequent.  That stopped the alarms momentarily but within a couple of hours it was freaking out again so we decided to remove the sensor and start a new one somewhere else later that day.  

The second sensor was okay.  It never really was as accurate as the first one at any point really.  And we had chosen to insert it on Ang’s backside and it was a bit of a bleeder.  We also found that she laid on it at night while sleeping which caused it to alarm, over and over, every single night.  It also decided to go haywire on Day 5.  We took a day off after that and let her go CGM free.  I have to tell you that those 24-ish hours were torture for me!  In ten short days I had gotten used to looking at it and at least getting some sort of a semblance of an idea of what direction her blood sugar was heading in when we did blood sugar checks.  I never really trusted the thing to give me an accurate number, but at least it was okay at showing me whether she was headed up, down, or holding steady.  

We finally put the third sensor in on her thigh.  She wasn’t happy about that one, but I said “Hey! Let’s try it.”  About 2 hours after the sensor was up and running (so maybe 4 hours from insertion) she caught it on the arm of the recliner and ripped it out.  Quite painfully, I might add.  Again, she refused to put a new one in right away and said she was done and no longer wanted to wear ANY CGM.

So, I dug in deep to some of my groups and reached out to the DOC for help.  One of the moms who I had talked to said her daughter had been using the previous medtronic CGM since 2009 and they had great success with the sensor on the arms.  It was more accurate for them there, it wouldn’t get laid on at night and cause erratic readings and alarms.  It wasn’t likely to snag on the furniture as she walked past.  So… I bribed Angelina to give it another try.

From the word “Go!” the arm sensor was by far the best one yet.  It didn’t give false alarms at night, it wasn’t really in the way.  The biggest annoyance was that Angelina’s pump was the receiver and I kept asking to look at it, which bugged her a bit because it meant I was in her personal space more.  Since we kept having problems on Day 5 I thought maybe it was the transmitter so on the evening of Day 4 I popped the transmitter off and re-charged it.  It was day 7 before we started seeing erratic numbers and alarms and decided to remove that one.

Well, since we had such great success we decided to try the other arm.  For whatever reason, the other arm was the worst sensor yet, aside from the sensor that ripped out on the furniture.  It started out reading over 100 pts different from her meter, and the closest we ever saw it was about 40 pts away from her meter reading.  And then, on the morning of Day 3 I woke up around 5am and went in to check Angelina and the alarm had been going off for an hour that she had a low blood sugar below 40.  Anything below 70 is considered low, and below 40 is really low.  Angelina didn’t wake up to the alarm and I didn’t even hear it until I went into her room and pulled her blanket back to look at her pump.  I did a quick blood sugar check and she was at 95, which is slightly below her target range of 100-150, but still definitely not low and not a concern at that time of the day.  So, I turned off the alarm and attempted to calibrate the CGM to show it that her blood sugar was fine.  

However, even after restarting the sensor it continued to alarm low for over four hours.  I would turn it off and every 20 minutes (the repeat setting we had set at training) it would alarm low again, even though blood sugar ranged anywhere from 95-145.  Finally, we stopped and removed the sensor and I called medtronic to tell them we wanted to return it.  Angelina was to the point that she no longer wanted to wear it.  It had been alarming at school for no good reason because it was inaccurate or had an erroneous reading that wouldn’t be corrected.  She was just done. And so was I.  

So, we sent it back.  The first few days without it were peaceful, but still a little nerve wracking and I still wanted to occasionally ask her if I could look at her trend graph.  I would catch myself and it would be a little upsetting to realize that there was no trend line (not even an inaccurate one) to look at.  So, we decided we definitely liked having a CGM and decided that we would try to order a Dexcom CGM, which is supposed to be more accurate.  It also has a separate receiver which means I can have possession of it and watch her trend line whenever we’re together without having to disturb her.  And, she can wear it in a pouch like she does her pump, so hopefully it won’t get lost when I’m not around.

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2 thoughts on “What has been going on lately?

  1. Ugh! Hearing about this makes me even more happy that, when I got my new Medtronic pump and the rep tried to convince me to switch from the Dexcom CGM over to theirs and I said, “Um, no thank you.” Not to say Dexcom doesn’t have it’s quirks as well, but nothing as crazy as all that. And the G4 is amazingly more accurate than the 7+ used to be, even within the 1st 24-36 hours of a new sensor. I couldn’t live without it!

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    • We were going to upgrade to the 530G. My daughter and I are both very sound sleepers, and there have been more than a few occasions when I managed to sleep through not 1 but 2 very loud annoying iphone alarms on the loudest setting in the middle of the night. So, I’ve learned when it’s really important for her to get checked during the night, I don’t go to bed until after the check has been done. And if she is low, as expected, I may not go to bed at all that night. Fortunately, we don’t have many of those nights. The medtronic CGM never work either of us up, even using it with a baby monitor. The baby monitor didn’t seem to pick up the alarms, but it would pick up the sound of her sheets rustling when she rolled over in bed. Anyway, the 530G sounded like it would be a great option for us with the auto shut-off feature. But, then the CGM just didn’t work right for her. I have spoken with plenty of people who have switched to it and it seems either people experience pretty much what we have, or they have no issues whatsoever.

      I don’t know if the Dexcom is going to work any better for her. I am hopeful that it will, but I won’t know until we try. She is more excited about the Dexcom and I am hoping that even if we have initial hiccups that she will be more willing to give it a fair shake. And at this point there’s not rush to try to return it if it doesn’t work out since our insurance covers 100% and we wouldn’t be trading it in for anything else.

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