I remember hearing about continuous glucose monitoring systems (CGMS) when James was first diagnosed with type 1 diabetes. They seemed absolutely amazing and so desirable. For one reason or another, it was actually several years before we got our hands on one. I think at that time the technology seemed a little advanced or overly complicated, and doctors may have been initially a little hesitant to write the prescription.
Before our first time around with a CGMS, when James was about 6, he had lived a pretty charmed life with regards to diabetes. I did all his testing and insulin dosing. We changed his infusion set on his pump and kept it on his lower hip where he really couldn’t see it (or, evidently, feel it!), so to him it was almost as if diabetes wasn’t even in the equation. He certainly wasn’t interested in knowing his blood sugar at that time.
Our initial experience was quite negative. In retrospect, I can kind of see why. First, I had heard that wearing the site in the arm produced accurate responses by the glucose sensor. So I had him try his very first sensor in his arm. All of a sudden, for the very first time, James could SEE his diabetes in a real way. He could see the sensor in his arm. It didn’t help that summer had just started and he was constantly in the pool, so while he wore the sensor he was also (often) not wearing a shirt. He had a pretty sharp reaction to the presence of the sensor. It was the very first time I had ever heard him mention, “I hate diabetes,” and it was probably the first set of tears since his initial diagnosis. After a few more failed attempts, we set the CGMS aside for a time.
The second experience was better. I tried again another year and a half later. We saw some more accuracy, and James was definitely less upset. I put the sensor on his upper rear hip — near his infusion set but sufficiently far away, knowing that SEEING the sensor seemed to be a really big deal to him. I practiced inserting the sensor until I knew how to do it virtually pain-free, and it was much better.
Shortly thereafter, we needed a new part for our system. And unfortunately the delay meant we really never went back to using our CGMS.
Fast forward to today. James is now testing himself and giving himself insulin, with our supervision. He’s interested in what his blood sugar is doing. He likes his pump because it gives him information, like how many units of insulin he needs and what his last couple of blood sugar readings have been. He’s interested in staying in range and being healthy, and it’s coming from a very real place.
And another key change: One of his classmates from last year has a CGMS! When we talked recently about a system that will let him know what his blood sugar is all the time, he got really excited. I told him that his buddy is already using it and likes it. And James really wants to give it a shot! So now we’ve been in communication with his endocrinologist, and we’re expecting a shiny, new device to come in the mail any day.
For the potential information that we’ll be able to obtain, for the ability to catch low numbers before they drop uncomfortably low, and for the chance to make smart changes in a variety of settings and conditions, I’m hoping the third time is the charm! Of course, CGMS isn’t right for everybody and your child’s healthcare provider can help you make that decision. I’ll definitely keep you updated.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.