Why it seems like we'll never hit a 5.something A1C (a picture essay)

[TiaG]

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.

[Michel]

@TiaG

Lately I’ve become discouraged about the possibility of lowering our son’s A1C further without significant life changes.

I feel for you! I will reply in a much longer message later (spraying for garlic mustard while it is warm…) but I must tell you: it gets MUCH better.

Before my son hit puberty, life was easy after we learned to deal with D – when he was 11. He was hitting 95% in-range, with MDI, and we weren’t half as prepared as you are. I am guessing when he hits his stride around 7-8, and once he is starting to get some decent mass to his body, things will be radically different for you.

With puberty, now things are very different. But I am optimistic they will get better in another 3-4 years.

All of this to say - it will get A LOT better.

[ClaudnDaye]

Tia, I’ve voiced it before and I’ll continue letting you know every time you let me…but you are an inspiration! My wife is a stay-at-home mother so for us, right now (until he starts school), we are lucky. Although she has an MBA and was working as a full-time accountant, she decided that, with 5 children, something had to give…and this was even before Liam was diagnosed with Diabetes. Her being at home has made our lives SO much easier…do we have less money? Sure, but it’s a trade-off. We were spending as much each month on childcare as we were spending on our mortgage. Now she can focus on homework with the kids, picking up/dropping off kids, all the stuff that was a hassle before with both of us working. Not suggesting this is for you! Just what made our lives easier.

Also, more recently…after you provided some of your insights to us, my wife and I …for the first time since Liam was diagnosed over a year ago, finally decided that we were hurting our son by not “being on the same page” with regards to treatment decisions. As a result, we now sit together and review/analyze the data weekly (right now Sunday, but we will probably be going to twice a week in the near future.) We discuss what changes we feel we should make in our sons regimen for the following week and, …after debating (sometimes passionately), we decide together what changes need to be made. We log the changes in our weekly change-log and we both agree to abide by the changes laid out from the previous week. This change alone has made our sons sugars go down significantly…(and saved us both some grey hairs and some arguments…) To me…quite honestly, the hardest part aside from keeping my son alive is having to fight with my wife over what’s the best treatment option. Now that we’re on the same page, I feel like things have finally started changing for our lives, and for Liam.

We’ve also recently discovered the importance of not always sticking to that traditional “15 minutes” bolus window…we now bolus and feed him differently for each situation. If he’s already between 80 - 100, we just feed him and bolus him at the same time. If he’s between 100 - 120, we’ll bolus and wait only 5 minutes. If he’s above 130, we wait the 15 minutes. We were finding that waiting 15 minutes all the time was causing post-prandial lows.

Since we don’t have the closed-loop system, I don’t have much in way of advice (not that you were looking for it), but we also experience the same spikes you’re discussing here and for many of the same reasons. But we have to look at our sons treatment as a “long term game”…sure, the numbers may occasionally score a touch-down (go off the charts and make us have heart-attacks), but our goal…at least, my wife’s and my goal, is to make A1C such that it mitigates, or eliminates adult health problems. I’m finally settling into the idea that, at our sons ages, there isn’t anything anyone can do to TOTALLY ELIMINATE the highs…or the lows. They are going to happen. As long as we are proactively trying to bring the A1C down, learning and growing around every bend, then I think both our sons are going to grow up to be strong, healthy adults who will feel “unlimited” in what they can do in this world.

:: big hugs to you for your wonderful example to all of us parents with children with diabetes ::

[Michel]

I think @TiaG’s present picture essay is truly seminal in many ways, and will inspire me (and many other parents, I think) for many weeks to come.

I started writing a series of replies, that are mostly not replies but rather thoughts that this essay inpired, but figured that some of them might best be set in a separate thread. My first thoughts inspired by @TiaG’s essay are laid out in this thread: diabetes kaizen.

[Michel]

@TiaG, are you still feeling the same way about this?

[TiaG]

Yes, I think so.

[Michel]

Do you run a lot of different basal schedules?

[TiaG]

@Michel, we did have about 7 basal rates for a while. We’ve since switched to three (nighttime, morning and afternoon). The logic for the switch was that it was too hard to keep up with changes that way (I mean, physically entering them into the pump when it’s attached to him). And, it became more difficult to “debug” when he was having unexplained rises or drops – was it the basal rate we set one hour ago, the bolus we gave 2 hours ago, or a basal rate that ran for the four hours prior to that? Or the openAPS algorithm, which uses basal as the baseline for 0? I realized that even a basal profile that doesn’t perfectly mimic his body’s true needs may still lead to better results if it makes it easier for us to change.

That said, I suspect there are more patterns we see repeatedly that are not due to food, and thus would technically fall under the traditional purview of “basal.” For instance, my son always drops after breakfast or plateaus, then has a rise about 9:30-10:30am, before plunging precipitously in the 15 to 30 minutes before lunch. It’s possible it’s a case of his food outlasting his insulin, but it also might just be a basal trend in his body. But the problem is, it’s quick; a rise of about an hour and a drop of about 30 minutes. A basal rate change typically takes an hour to kick in, so attempting to combat this with a pre-determined rate just adds complexity. Another example is the dawn phenomenon and the nighttime hormone rise. All these are predictable and clearly based on underlying metabolic processes – and all happen so quickly that basal is counterproductive for us.

I wouldn’t say our control has worsened… it’s just plateaued. I’m pretty frustrated with how our days feel, though. They feel more rollercoastery and I think a lot of it is that we’re more sloppy with bolusing timing and techniques, eating out more, and insisting less on good practices from daycare workers (for instance, the really good teacher has been out sick for a few weeks and the ones left behind are simply not as good at catching lows at our thresholds, and they also compensate by overtreating).

But my secret dread is that Samson’s diabetes is just progressing, he’s lost any hint of residual beta cell function, and without it, his swings are just much more wildly unpredictable day-to-day.

[Michel]

@TiaG

And, it became more difficult to “debug” when he was having unexplained rises or drops – was it the basal rate we set one hour ago, the bolus we gave 2 hours ago, or a basal rate that ran for the four hours prior to that?

I can totally understand that.[quote=“TiaG, post:8, topic:601”]
But the problem is, it’s quick; a rise of about an hour and a drop of about 30 minutes.
[/quote]
I can understand that too.[quote=“TiaG, post:8, topic:601”]
I think a lot of it is that we’re more sloppy with bolusing timing and techniques, eating out more, and insisting less on good practices from daycare workers
[/quote]
I see the same thing happening with us when we get a couple of really tough weeks piling up on each other.

@TiaG

But my secret dread is that Samson’s diabetes is just progressing, he’s lost any hint of residual beta cell function, and without it, his swings are just much more wildly unpredictable day-to-day.

I was fearful of this too. But, now that it has happened (I think – I have said that 3 times already) the outcome does not appear so bad. It’s just more of a random walk, like the stock market, instead of flatter lines, but the trends underneath are just the same.

I have thought a lot about your original post. How much can we end up expecting to control, and how much is going to be just what it is? I wish someone had written a book about the different phases of diabetes in childhood. If nobody has by the time my son goes to college, I will!

My guess is that you and Harold have the worst of it, when the little tykes mass so little that they have practically no insulin inertia. Then sometimes around 4-6, they start getting enough mass that patterns get established for a little longer, and can be controlled better – it must get better and better until right before puberty. For us, right then we were in total control. And then, of course, at puberty it all goes to heck again, as it has for @Chris and for us. But when puberty goes away, then good control must return with a vengeance, I hope.

It is college I fear most

[Michel]

Splitting the posts on fear