Lately I’ve become discouraged about the possibility of lowering our son’s A1C further without significant life changes.
Most of the time, we do a pretty good job keeping him under 200, and at least 60 percent of the time, below 155. But at least a few times a week something will happen and he’ll spike up to 300 or even more, and several times a week (AT LEAST every other day) he’ll hit 250 for what seems like it should be an avoidable reason.
Exhibit A: Yesterday
12:30pm: After some intense playground activity, son has a hard crash. My husband treats the low with 8 grams of carbs, which is twice the usual, because he just doesn’t seem to be coming up. Then he lets him eat without bolusing and waits for a rise. Sensor is being wonky with a lot of lag time, so he goes from 110+ish to 200 in one reading for lunch. We manage to bring the spike down but not before he spikes to 284.
7:30pm: Son is in the 110s when the sensor restart period begins. We lay down with our kids for bedtime and both of us fall asleep, so we don’t do the check at 1-hour into the warmup period like we normally do. When the sensor restarts he’s 385. Yikes! it takes all night for him to go down.
Exhibit B: Friday
7:30am: We’re running a bit late and kid is hungry and crying so we don’t wait for a prebolus, he spikes up from a food that is normally no problem.
12pm: The artificial pancreas is down and can’t connect to WiFi right as he sits down to eat lunch. I can’t give him his bolus or contact school teachers so he starts going high. I drive to school to give him a manual bolus but the damage is done; he spends much of the afternoon in the 250s
Exhibit C: Last Saturday
8:30am: Kid eats breakfast, then has to go to gymnastics class. By about 8:45am it’s clear he’s going high but we don’t want to interrupt him during class to give him a bolus or risk sending him low with an aggressive bolus beforehand – we’re wary of causing a prolonged low during class which has happened the past few weeks. He’s high until about 1:30pm.
4pm: Starting to climb high despite an ordinary meal. I begin to suspect he’s sick; turn on a “sick day basal program” after his bath at 8pm. The next day is better:
but not before he spends nearly half the previous day high.
And this is just in the last two weeks; every week has one of the following things go wrong, if not multiple of these things: a) son gets sick b) kid has random growth spurt which we are too slow to catch c) we are unable to prebolus for a meal or wait to bolus because of a previous low or because of social setting d) older child enables younger child to sneak food e) site gets dislodged at daycare and our son doesn’t notice or tell anyone e) pump is accidentally suspended for a few hours before we notice f) openAPS goes down, preventing automatic bolusing or temp basal adjustments we are anticipating g) can’t get ahold of teachers at school to prevent a low, he crashes; they overtreat and he goes hugely high because he’s out of range of his openAPS h) we fall asleep during lie-down time and are unable to bolus for his night-growth-hormone spike in time. This is not even counting all the times when he simply needs more or less insulin than we anticipate for a carefully carb-counted meal.
I’m just getting discouraged because a lot of these things are, in some sense, avoidable, but avoiding them all and improving our overall A1C means a lot more vigilance hour-to-hour and focus on blood sugar at the expense of a functional life. Many are what I’d call “unforced errors” because they involve either a conscious or unconscious choice to be a little less vigilant or proactive in the moment. Reducing the frequency of these occurrences requires some radical changes to daily life. For instance, I would say at least 40% of our son’s highs during school hours are because of communication issues; either with his pump or the openAPS or with his teachers. We could keep him out of school and the problem would be solved. But that would mean radically restructuring our life.
And then there are all the other little moments in the day which seem to just happen with tiny split-second choices. I know that things go worse when I do the first part of a bolus for a meal and then hand off my son to my husband, but sometimes I need a break or have to go somewhere! We could be stricter about waiting to eat till my son was in range or had some active insulin, but then we risk the scary situations where he doesn’t eat, and in restaurants that’s just not feasible. Or the times when I know his settings need to change but then he doesn’t wind up taking a bath and his pump doesn’t come off that day, so I let bad settings linger for an extra day. Then there are all the times when I know I should be checking his numbers but we’re having fun as a family and I don’t want to be taken out of the moment.
I don’t know if I’m looking for advice, just venting. I feel like we do need to be a little bit more disciplined in certain ways but it just feels like if it’s not one thing it’s another. I’m definitely getting better at avoiding spikes due to food, and getting a bit quicker to recognize when a sick day basal is in order. But all these little choices in the day that are tougher to make for another person, who you can’t really bolus remotely in any truly reliable way, do add up.