In the Spring of 2008, this press release announced that Sugar’s insulin pump at the time (Cozmo) had partnered with a continuous glucose monitoring system (Navigator). During that same time, we were preparing to end Sugar’s first year of pre-school after a rough start followed by a pretty rocky school year.
Once Fall arrived, Sugar began kindergarten at the same school. She was unable to distinguish low blood sugars from anxiety and hunger, and spent a great deal of time going to the Health Office. The nurse was very bothered by her frequent visits, and Sugar began feeling afraid when she felt she needed to go to the office for a blood sugar check. She had low blood sugars in the 20’s twice after trying to avoid a trip to the Health Office because she didn’t want the nurse to get angry with her. Then she had an episode of high blood sugar (“HI”) that required an injection until someone could get to the school to change the site, and the nurse refused to administer the insulin, despite the fact that a parent confirmed it was the correct dose. She was uncomfortable because she hadn’t ever administered a dose that high before. (Mind you, it was also the first time she needed to correct “HI” at school!!!) Instead of administering the insulin she needed via injection, the nurse sat her at a table in the Health Office and had her eat an 80 (!!!!) carb lunch while waiting for a parent to arrive.
It was a mess!!!!!!
After that episode, I decided it was time to try a continuous glucose monitor (CGM). The choice was obvious since Cozmo had established a partnership with the Navigator. After a few months of insurance ramblings, and A LOT of patience, we received her Navigator in the Spring of 2009.
Now, keep in mind, that it was perfectly commonplace to hear about insurance fights and whatnot when trying to get a CGM covered. Additionally, since it wasn’t approved for use in a child, we had to argue that battle as well. Our endocrinologist was on maternity leave and the doctor who saw us in her absence was adamant that he’d give us the order, but we could not – under any circumstance – call his staff for help with it. They hadn’t been trained and didn’t have any precious time to spend trying to answer my questions. There were no such thing as trials. You either got it or you didn’t. Period. Our insurance at the time agreed to pay for ONE CGM during the LIFETIME of our policy.
Suffice to say that GETTING the CGM took some time. By the time it was actually in our possession, I had masterminded up a scenario of how wonderful it was going to be. In my mind, she would be able to find immediate reassurance that her instinct to request a blood sugar check was correct…it would help me identify patterns of lows and highs to assist with adjusting her pump settings…we would **SLEEP** at night knowing that something was keeping tabs on her numbers and would alert us if there was trouble.
IT WAS GOING TO BE GLORIOUS!!!!
To make a long story short…The insertion was incredibly traumatic and complicated. We had to cut the dressing in a special way for extra adhesive. After the sensor was placed (which she screamed through every time, despite EMLA), we had to keep dabbing at a little window until it stopped bleeding. It NEVER stayed on for more than 48 hours because the adhesive would fail, and we NEVER had readings consistent enough to trust. There was a **TEN** hour start up window — during which time, she was ideally not supposed to consume any carbs. AFTER 10 hours, sometimes it would tell you start over with a new sensor. You had to calibrate according to IT’S terms at predetermined time intervals. For this reason, I had to make all sorts of special accommodations so I could go to the school and wait for it to demand a blood sugar –around the time I guessed it was going to feel like it. I was going crazy doing everything I could to make it work. We were blowing through test strips like candy trying to get it calibrated. It was throwing information at me that I wasn’t prepared to process. She was incredibly frustrated with the entire mess. She hated it. She said it hurt. She wanted to throw the whole thing in the trash!!!! After about 4 weeks of insanity, our insurance company announced they would not refill the sensors…at that point, we had to decide if it was worth the fight.
And we decided it wasn’t. Even if we DID figure out how to use the stinkin’ thing correctly (and get it to stay on!!!!), our insurance wasn’t going to pay for the sensors. What was the point? With that, we threw in the towel, took it off, and it’s been sitting in the closet ever since.
Our experience left a HORRIBLE taste in my mouth, and a FEAR inside Sugar’s heart. It’s taken a long time to mumble the letters C-G-M without feeling anxious.
Through the DOC, I’ve learned more about CGM experiences. I’ve paid close attention to success stories. I’ve hailed victory with parents who have had positive CGM adventures. I’ve cheered over 3 and 6 hour windows with a nice fine line in range.
But I HAVE NOT been able to bring myself to try it again.
So, what’s next?
|11/30/10 Sporting her Talleygear Tummietote and trial Dexcom sensor|