Too Little, Too Soon

In spite of her diabetes, for Lia, life is pretty simple. She loves to take walks up the road, fish off a dock, and she’ll still will occasionally host in her room a miniature tea party for two. If a person is kind to her, she’s kind to them back. She never says, “but it’s complicated”.

Riva Greenberg wrote an interesting piece earlier this summer (and which appeared last week at A Sweet Life) on a disappointing experience she had using a continuous glucose monitor, and it reminded me of our own brief and unhappy history with one of these hi-tech devices.

About eight months after Lia was diagnosed with T1 and only six weeks after going on the Animas Ping, our CDE suggested we give a “blind” CGMS a go. Franca and I agreed, after all, what in the world did we know about diabetes management. We were still wrestling with its very presence, and on top of that (disqualifier), we thought it’d be good information to have in helping us configure the settings and maximize the power of the pump. Unfortunately, it appears, heightened emotion and naivete are two sure signs that other than the experience of trying something new, very little good will come of the extra effort. Now we know.

For starters, the device was just too big. Lia hated it and its presence, in her mind, was inescapable. She could not forget it was there and so she scratched and scratched at the area, clawing her nails over and around the little contraption until she had managed to unplug, as it were, the business end of the monitor, rendering lost the last day or two of information, a fact anyone had failed to realize until the nurse at the endocrinologist’s office saw the missing days in the data, or rather failed to see the data. In our mind, even one second spent in discomfort or otherwise hampered by diabetes is one second too much. Strike One.

Though our endo’s office had assisted us in initially programming the pump’s settings — one carb ratio, one insulin sensitivity factor, three basal rates for a 24 hr. period — it became pretty much up to us to figure out how to fine tune them. Ignoring (for now) the gross dereliction of duty I now believe that was, setting up a pump is no simple small task, no matter how long you’ve had diabetes. Six weeks later we were still chasing numbers all over the place, correcting blood sugars day and night. The fact of the matter was, it was just too soon for us to be test driving the newest technology. Going to a pump from shots is not the same as say, switching from a stick to an automatic. We were still trying to figure out the complexities we already had. Were we ready to try a CGM? No way. Strike two.

And finally was the data itself. As this was a blind CGMS, the readings were not provided to us in real time. It wasn’t until two weeks later at our endo’s office we were finally able to see them. Without going back and comparing our logbook to the data the CGM spat out, there was no way to know if the thing was even calibrated correctly. For sixty bucks, I honestly expected more than that. End of story. Strike three.

Like Riva, Franca and I would really love to have a CGM in our corner. It’s something that should be in every parent’s corner. Taking care our children is hard enough without using all available resources. Unfortunately, we’re not looking to sign one up anytime soon, and it wouldn’t matter if we were, Lia’s experience turned her off the idea anyway. In her mind the rules just aren’t that complicated. Three strikes, you’re out is plenty enough.

6 thoughts on “Too Little, Too Soon

  1. Four years after going on a pump, our son, age 16, decided to try a CGMS when he got his new pump. I knew, and he knew, that inserting the sensors was going to be a challenge for him; he hated the insertion device for the infusion sets he used to use. And the device and needle for sensor insertion? Much more threatening than those he used for his infusion sets. Obtaining the CGMS was entirely his choice. He wanted to use the data to try to manage his blood sugar more effectively when he is running cross-country and track. The CGMS arrived in mid June and he has spent maybe 20 days total using the CGMS. The sensor insertion process still provokes considerable anxiety. (And causes bleeding and bruising) Yes, the CGMS is useful, once it gains some accuracy, a process that always takes at least 24 hours, often longer. It does show trends, even if the numbers are way off from the meter. Because of the variation between CGMS and meter readings, we do not feel confident enough to discontinue nighttime blood sugar checks.
    I certainly don’t think a CGMS is essential for a child who can feel and communicate her lows. Lia will be fine until she decides she wants a CGMS. Until then, I don’t believe it is worth the anxiety and pain for a child her age.

  2. thanks for sharing your experience. i agree that it was al too much too soon for you! we have a cgm and L doesn’t like to use it unless completely necessary (when she’s at a sleepover). she also hates the needle, and frequent alarms which may or may not be accurate anyway in the first day or two. but when she’s wearing it and when it’s running smoothly, she really does appreciate the extra info it provides. it’s a contradiction, like so much in this world.

  3. I hear you Steve and it’s so good (good?) to hear from another parent about the CGM and their child. My gal does not want anything to do with one. She knows about them, sees them in action, but her polite response to me when I ask is ‘no thanks mom.’ Gotta love an honest kid. She tells me she doesn’t want another device attached to her and doesn’t like that long needle. I could force it on her, but that’s not my parenting style. Sometimes I feel like the biggest wimp, but I applaud that my gal stands up for what she wants and doesn’t want, so that makes up for the wimpy feeling :0)

    1. That is wonderful (Grace standing up for what she wants, not your being wimpy!). Franca and I were just talking the other day how we still hate to even do the site insertion on Lia. It requires a touch, it seems, that we can’t duplicate 100% of the time, and so sometimes (read: often) it stings and causes a few tears. I can’t imagine the grief of a changing out a CGM. “No thanks”, is being kind. I applaud Grace too for her politeness 🙂

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