Adventures in T1D management: when a 9-year-old does it alone

A couple of weeks ago V got a fully functioning iPhone. She’s not allowed to have music, games or Youtube on it, and it mostly stays in our bedroom charging. The main purpose of the phone is to have mobility of blood sugar monitoring with the new Dexcom Share receiver, and to have a reliable way of communication when V is away from us (e.g. a party or sleepover).

The acquisition of the phone happened a day before the start of our month-long spring break. During school break kids spend a lot of time with their grandparents, and we were really excited to have this improved tool at our service so that we could help V manage diabetes there. At her grandparents, she’s mostly flying solo. Grandma has gotten much better at counting the carbs, and she is able to check V’s BG, but she does not know how to operate the pump, does not understand the intricate complexities of daily BG management, and cannot even begin to comprehend how to adjust basal and bolus rates. Fortunately, V is a pro at it all and we felt more confident than ever that with the improved ability to monitor her we would have it all under control.

In my idealized fantasy of how things would unfold, I pictured being able to see V’s BG throughout the day, call her when I spotted issues and ask her to take appropriate action, and generally stay on top of things and keep BG within a reasonable range. The reality smacked us in the face. First, the break itself brought a massive disruption in routine. Breakfast at 10 AM instead of 7:30-8 AM; no physical activity at some times and being overly active at other times; completely different meals at grandparents’ than what V is used to at home. All of it wreaks real havoc with BG.

And then we remembered that V does not always stay in range of Dexcom receiver (and won’t wear it on her person), does not always pay attention to alarms, realized that she does not always hear a phone ringing, and if there is problem with phone and CGM connection, V is not always around to fix it and her grandparents are no help there at all. Our ideal plan fell apart within hours and V’s BG went through the roof for the majority of the day.

Despite everyone's best efforts, this happens

Despite everyone’s best efforts, this happens

After that first day fiasco, we reviewed and re-grouped. We realized that V needed more support. It is too much to ask a 9-year-old to self-monitor her BG all the time. While she is very responsible and takes great care of her diabetes, she still forgets, gets absorbed in play, does not always test as much as we’d like, or gets overwhelmed when she has so much to do. She is a kid! It’s hard to do for an adult and it’s definitely way too much for a young child. We came up with a more specific plan that V would call me first thing in the morning so we could figure out breakfast carbs and pre-bolus, and then would stay in touch by phone every couple of hours to monitor BG and trouble-shoot. Subsequent days went a little better, with more frequent contact and closer monitoring, but were still nowhere near the idyllic picture I initially envisioned. It did not help when V misplaced her Dexcom one day for a good portion of the day!

But wait, there is more. These highs V’s been experiencing have been extremely stubborn. Made undoubtedly¬†worse by all the changes, they are still too much even under the circumstances. We realized it after we began throwing more and more insulin at them without much result. Why? Beats me! There are so many factors that affect blood sugars (a subject of a separate post sometime in the future) that we could sit here and speculate forever and get nowhere. Regardless of the cause, it looks like some changes have to be made and I am awaiting a phone call from the pump nurse to review the numbers and change our course of action.

Things are easier when V is at home and we are actively and closely involved in her diabetes management. When she is away, there is only so much burden we can place on her shoulders. Nor can we be particularly aggressive about treating high BG because we are not there to be proactive about the inevitable lows, especially at night. Yet, besides the obvious need for me and my husband to work and maintain our regular schedules, we do not want to deprive V of the opportunity to spend time with her grandparents during breaks. The price she pays for it is a far less desirable BG and having to carry more responsibilities than some of the adults have to bear. It is not fair. It sucks. But we will do our best to dance the dance of control vs. letting go, and to play our sucky hand as well as possible.

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