I wish your amusing reflection were true. I would love for my son to have your curve. As a comparison, the last 24 hours were really good for us these days, but poor by any other standard for us:
If you look, you will find an evening hormonal peak where he had to stack 3 times and ended up with a real CF that was about 3x his regular CF, followed by 2 hours of nasty lows (several times into the real 40s per BG meter). Then he had a bad post-exercise high at school after sports that took hours to resolve, and he is now fighting a mild low.
This represents a good day for us right now: his night situation settled around 1:00am rather than 4:00 or 5:00am, and he only had to wake up once to take some carbs after that. But, as you can see, nothing to boast of: BG fight from 6:00pm to 1:00am, then again from 12:30pm-4:30pm.
I am not posting this to ask for feedback but to adjust your perception of our problems. I am realizing that the situation we are facing is not well adapted to forum feedback: our problems are not focused enough. I think we are better off figuring this out on our own, and I am not looking for more advice at this stage. We will eventually find our way through this.
We feel your pain Michel. This growing isn’t easy. I wish I could tell you we have settled down, but we are still in the midst of many many hormone events, with no end in sight. Not too hard to realize why the majority of teenagers have such high A1c’s. All the stuff you have instilled in him will pay off when the growing stops.
I feel you. Here’s our last 24 hours. I stayed up to 1AM because he had spegetti at 8PM (against my better judgement), and thought that staying up until 1AM would be sufficient…as you can see by the curve, this wasn’t the case. He was upper 200’s, low 300’s for 3+ hours.
The old me would be kicking myself right now…the new me just says “F***”, boluses him, then goes back to sleep. I’m just not hearing alarms like I used too anymore…That’s causing us highs and lows that are being left untreated for longer than we wished. We’re currently at 1.8% severe lows this week.
@Michel this seems really tough. I have no advice really. You’re actually doing a fabulous job given what you’re working with – but of course you don’t control the conditions you’re given. Kaelen’s growing and there’s a lot of stuff going on in his body and his mind that you can’t anticipate with insulin. And then his schedule is all over the place. It took us months to feel in control of Samson’s BG during his one modest gymnastics class – I can imagine that having a gazillion activities would be near impossible to get on top of without someone looking at his numbers in real time as a full-time job.
I agree with others that a long acting basal could help – possibly untethered – although unlike others, I have a kid who hates shots and can understand how Kaelen would prefer the pump’s convenience and discreetness. I don’ think it’s worth abandoning altogether.
But I actually am hoping this may just be a crazy period that will wind itself down over time, that you guys will continue making micro-refinements, that you will have no one click moment necessarily but will have gradually gotten a handle on his numbers. Then sometime in the next few months you’ll look at the numbers and realize they really have gotten a ton better!
And most important – that you are p. I just think we can’t actually do a good job with our kids if we’re at a certain level of sleep deprivation. I’m still a total zombie and making tons of unforced errors during the day because of the baby but when I hit a crucial threshold I basically just crash and then everyone around me has to adjust. My work productivity plummets to ZERO. I get super screamy with my kids and wind up getting a huge migraine that forces me to lie down anyways. That’s not really a safe or good way to proceed. Could your wife take over for any length of time? What about family? I’m of a different opinion from some of the old-timers here; I think our kids have a lifetime to face waking up at night and personally think they should get sleep as much as possible. Maybe you do want to work with Kaelen for, say, one day a week on being in charge of his numbers overnight – but certainly not all week.
Also, maybe it’s good to have a policy like a “survival day mode” in which you just do the bare minimum at night. So agree in advance that after, say, 3 or 4 days with crummy sleep (say, less than 4 or 5 hours total each night), set your low threshold to 55 on Dexcom, set the high threshold to 250, and try to get as much sleep as possible. That can also be Kaelen’s “practice” wake up day.
One other thing. I’ve noticed over the past two months is that the peaks don’t necessarily dramatically impact average BG if they resolve quickly – so I’ve become much more relaxed when Samson spikes up to 200 and then goes back down. Since hormone peaks seem to be fast-in, fast-out, you might see what happens if you make a rule to just hit them ONCE with some fixed bolus amount (look over the data to see what that is, find an average, calculation the standard deviation in how you respond and then call it a day) and then just ride out the highs, with a reduced risk of needing to correct lows on the downswing. In the end, the lack of yo-yoing could wind up leading to roughly the same, or only slightly higher, average BG.
As a quick update, we did figure out one small part of this conundrum. As @dm61 suggested, we did find significant absorption problems with the Pods by testing with pen injections. It is only a piece of the puzzle but it explains some issues.
We have also been able to correlate significant differences in insulin activation time with sickness, up to a difference of 40 minutes (from our norm of 45 minutes to 85 minutes) in some conditions.
The boy is quite sick right now and has been for a while—I don’t have any time to come up for air, but I will come back as soon as things calm down some.
We had our regular endo visit today, and got a bunch of feedback from two experienced nurses, who spent a lot of time with us reviewing our BG curves and pump info. We received some very valuable feedback. Here are some nuggets:
there was consensus among them that it is worth our tracking a separate Correction Factor for carb corrections and for hormone peak corrections. We have just started doing it and I have great hopes for it, since we now have very sustained hormone peaks that resist multiple stacked boluses.
Something that surprised me: they told me that, based on the insulin curves they see on the 670G, they now realize that basal needs can vary widely from day to day. They were not surprised at all by our frustration with varying basals. It seems that we are going to need to adapt to that. We had a good discussion on predicting basal need changes based on diet, exercise, sleep and stress.
One interesting thought that came up was the idea that possibly several different basals could balance a night in a similar way: possibly, as an example, a 0.75, 0.85 or 0.95 U/hr may all balance a night flat. If that is true (none of us there knew for sure if that would work) It may well explain and resolve some issues we have had, and cause us to up our basals more aggressively in the general case. This is an experiment we are going to run: I still have to think through how to set it up…
the two most experienced nurses we saw felt that we may want to try upping our insulin use in both basal and corrections: great to hear because so far our endo practice has been disapproving of our using large amounts of insulin early on. Now they are encouraging us. I am not sure if they trust us more or if they are coming to a more aggressive stance on BG control.
we may need to dose for larger protein-only snacks, which we have not done so far.
Our A1c was still at 5.6%, which was a happy surprise (especially with a horrifying SD of 45, 50% higher than we have ever had over 3 months). The head nurse told us that she felt we are the most experienced/successful family in the practice. Normally I totally discount this feedback, but this time it was strangely good to hear after all the difficulties we have had in the past 3 months.
@Eric -
My reading of the post by @Michel was on a given night whether you had happened to select 0.75 or 0.85 or 0.95 that any one of them may have had the same results.
My experience would agree with this. There is no conceivable way we could otherwise get flat lines in-range over night. The probability of me exactly hitting the proper basal rate all during the night is ridiculously small.
IMHO a simpler and more likely explanation is there is more going on in the body then I understand. (That is certainly a reasonable assumption.) Something is helping out to balance the BG. If we can get it close enough then something else kicks in and fine tunes it.
There are obvious limits to the self regulation / fine tuning as we clearly have nights where the BG goes into the stratosphere and nights where the BG is hugging the ocean floor. But on the nights we can get mostly flat-line and in-range going into the night and then for the in-range & flat-line to continue in range the entire night - something beyond our feeble attempts has to be at work here.
That’s not quite what I see. If I needed 0.85 units, then 0.75 would not be enough, and 0.95 would be too much. But my alpha cells are much less responsive than younger diabetics, so it is probably different for me.
I’m glad you got some helpful feedback! I hope that helps things smooth out for you.
I don’t mean to pick on details, but that sentence made me cringe a bit—45 SD is clearly concerning for you, as it is much higher than K had been running, but it shouldn’t be “horrifying,” because sometimes things get out of whack for a little bit and that’s to expected when you do diabetes for years on end (which is the goal here, right?). Recognizing patterns as something you want to work on, but also not labeling them in such a negative way is important for both you and to model for K, who is going to have to learn that as a life skill when he takes this over without you and inevitably has some times when it’s going to be screwy and not in ideal ranges, but needs to not end up feeling discouraged or crappy about them in a way that it makes it worse or makes it tempting to avoid the information altogether.
Wouldn’t going low gradually and not treating it and seeing if it stabilizes or rebounds eventually do the trick? If you’ve got good alpha function, you should see a rise eventually, right?
I assume I have some alpha functioning despite being a longtime diabetic (perhaps though because for many years I ran relatively high and wasn’t burning out my alpha cells with lots of lows), in part because if I have more than more significant or prolonged low (like a gradual one that I let sit in the 60s for a bit) in a 12 hour period or so, maybe longer even, the next low is much harder to treat and tends to be more persistent, which makes me think I’m usually getting some help from my liver that is then not there if I’ve recently used it.
I believe they can use an arginine injection to stimulate the alpha cells and measure the alpha cell function. But I don’t know how often something like that
As a side note, I have recently started looking at using L-arginine as a supplement for improving athletic performance.
You are right. In fact, you are the voice of reason!
I never thought of doubting that before for ourselves. But, after the discussion we had, I wonder: I have not actually tested if, when we are too low and increase a basal then find a good level, do we remain stable if we increase it further (and vice versa for lower of course)?
To test it, I figure that we need to find a good night that quickly shows stability.
This is my reasoning on this too right now, purely a probabilistic one
But I think we won’t know for sure until we test it. I figure a basal that is too high may end up still being stable (alpha cells), where one that is too low would probably not be (beta cells). But I am not even sure of that: the research I read on alpha cell function and glucose regulation is quite contradictory right now, and in a state of flux. I think there is no very clear understanding of the whole regulatory system in a normal person and in a PWD.
Glad you got some good feedback. I hope it’s helpful. Any mention of trying tresiba at your appointment? I understand it doesn’t seem like the direction your needs are pointing, but those things can be deceiving.
I try to go with one thing at a time! This appointment I pushed for Afrezza. I actually have some limited amount of Tresiba at home that we could experiment with But I’d rather start Afrezza before Tresiba. Afrezza is an easy experiment but Tresiba would best be tried when the sports seasons are off, in August for us.
Definitely don’t agree with that analysis. Sports season is the entire time from now until August, during which you’ve readily acknowledged that what you’re doing isn’t working well… that’s a long time to continue something you know isn’t working—- I bet within 3-4 days you’d see massive improvement. That’s the whole beauty of tresiba vs other basals is its largely unaffected by physical activity, whereas rapid insulins, which you’re using for basals, absorb extremely more readily with increased physical activity…
Afrezza is great, best thing that’s ever happened to me with insulin, but Foundation has to be strong or the whole house won’t be built right. (Eta afrezza would still be highly effective for corrections but you’ll be using it a lot more often than necessary, and having a lot more unnecessary lows, as long as you keep goofing around with he pump and using rapids for basal)
Glad to see your visit made a positive difference in your outlook, which is probably the most important thing at this moment. It seems that you are doing well, and have the energy to keep tackling the issue. That is a A1c worth celebrating btw. Hopefully, you made that happen. Small victories add up.
For you this is the case. That’s absolutely not true for me, and I love Tresiba, but it’s really not true for me. I found it doable to make adjustments when I was suddenly doing a week of much more activity, but it included a day or so of lows on the front end, and a day or two of highs as I built back up my insulin levels as I changed back. I don’t think I would be able to use Tresiba if my day-to-day activity level changed dramatically, so I would not presume that everyone would have the same results that you do, or that the above quoted thing is a universal characteristic of the insulin.
p. I just think we can’t actually do a good job with our kids if we’re at a certain level of sleep deprivation. I’m still a total zombie and making tons of unforced errors during the day because of the baby but when I hit a crucial threshold I basically just crash and then everyone around me has to adjust. My work productivity plummets to ZERO. I get super screamy with my kids and wind up getting a huge migraine that forces me to lie down anyways. That’s not really a safe or good way to proceed. Could your wife take over for any length of time? What about family? I’m of a different opinion from some of the old-timers here; I think our kids have a lifetime to face waking up at night and personally think they should get sleep as much as possible. Maybe you do want to work with Kaelen for, say, one day a week on being in charge of his numbers overnight – but certainly not all week.
