So we’d been having more nighttime lows than we wanted to be having and it was mostly because we were just not moving Liam’s CGM LOW alarm up. We had it at a standard 70 as the low. Well, at night, when he’s sleeping…the alarm wouldn’t even sound until it’s in it’s 60’s because it never stops perfectly at 70. This means he’s already at 50…possibly lower. So based on what some here recommended, I’ve begun changing his devices each night setting the low alarm at 100. This way, it sounds at 95, which means he’s really somewhere in the 80’s due to the time gap of 15 minutes. It allows me time to treat and get him back up without him ever crossing the truly low threshold of 70 that we try to keep him above.
Whoever recommended that, thanks a lot. It sounds like common sense to do, but it just never crossed my mind until someone mentioned it. If you have a child who drops low at night (or if YOU as the diabetic drop low during the night), and you don’t move the low alarm up…you might want to try it!
Do you find that you are waking up more often? I would say most nights Samson dips down into the 70s for an hour or two without ever crossing over (or maybe 68, 69), and he’s mostly higher on finger prick. So we don’t usually get up to treat at those levels.
It would be nice to avoid those crashing lows but sleep is already in short supply around here so I’m worried the alarm would sound for hours without us having a reason to treat.
Not really for us. For you this method may not work if Samson remains relatively level it seems…we have had those nights where he stays level all night, but for us, Liam tends to move down very slowly through the night. 2 - 4 points at a time usually. We don’t ever let Liam stay in the 70’s during the night because it’s too risky for us…we’re not that brave yet. Our “comfortable” zone for nighttime is 100 - 130 and we try to stay in that range. If he dips below 100 and looks like he’s continuing to decline, we give him a tablet (which he chews up in his sleep) and then go back to sleep.
Also, I know some will speculate that if he goes low like this that we may need to back off of the basal…and to that I say, we’ve got it at it’s lowest hourly setting… (.05). When we ‘suspend’ the insulin, he ends up going high and staying high through the night. This is our best setting right now for Liam until he grows some.
Also if you look at the picture above, you’ll see the line is at 70…that’s because I’m now awake so we move the low threshold back down to 70 because we’re awake and keeping that all-powerful watchful eye so that we can treat if we need too long before he gets low…don’t always get it perfect (like his “breakfast” this morning he dipped down to 65 only for a couple ticks), but we get close “most” of the time.
Yeah, I would say it’s pretty typical for Samson’s readings to look like last night:
When I finger pricked, he was 85. So I just let it go and soon enough he started rising. I’m guessing ours WOULD continue to drop if we didn’t use the closed-loop openAPS system. He always starts a little higher earlier in the night and then drops between 3am and 4:30am and we’ve never figured out how to eliminate that drop. But because of OpenAPS, he has negative IOB (i.e. e’s been zero-temped for a few hours) once he actually hits the 80 threshold and so his downward drift is very very slow and I don’t feel worried about it from a physiological perspective. Most healthy people have fasting blood sugar in the 70s so I figure it’s fine if he’s actually at that level some of the time.
Also can you teach me how to make my kids sleep later?? Breakfast at 10am?? My kids are ALWAYS up by 5:30am - 6:30 am. Today because they both woke up in the middle of the night, they slept in… till 7:15 am
We’d love for Liam to ride 70’s or 80’s all night if it were possible for him, but at least for the moment, it’s either up, or down…there is very little “level” time. Even our level periods have small roller coasters associated with them (-/+ 10 points up and down).
lol. Wow, you all are some early risers. What works in my house is laying down the law…my kids would LOVE to get up to start playing their electronics. I’ve told them NO ONE gets up before 7AM except me, and that’s to drive in to work. If you wake up…turn your TV to something, turn the volume down and don’t make any noise – respect those who are sleeping.
With regards to Liam…he still sleeps in OUR bed. lol. As long as he’s cuddled up next to me or Erin, he can sleep until we wake up. He’s literally slept in bed with her until 1PM on a few occasions. We have a King sized bed with 4 bodies in it atm. We will need to kick Liam out and hopefully Quinn (his little brother) also, to make room for the FINAL baby due in the Feb time frame. They both have their own beds…they just want to sleep in our bed. And especially with Liam, I like to keep him (and his alarms) as close to me as possible.
Yeah, it really seems like for us, openAPS is partly compensating for the fact that at night our son needs a lot less basal at certain key periods, like 3 to 4am. Probably if we were programming basal in and it wasn’t too complicated we’d assume he needed a zero basal from about 2am to 4am.
The other reason I often let him ride the stable “lows” out is because if I treat him with carbs, he often spikes up and then dips down lower because openAPS will momentarily detect a sharp rise, cranks on again, and gives him 0.03 or 0.04, which is enough for him to dip down. I think we’ve got to tweak our settings again, make the sensitivity weaker or make the carb ratios even weaker, because treating lows often leads to a roller coaster at night.
Here’s the night before, when I treated a low preemptively, thinking I’d get ahead of the problem. He wound up bouncing up briefly before dipping down to 49 :frowning. Of course that night a low was pretty much baked in as he’d skipped dinner – i always find that even though basal is not supposed to be affected by what he eats for dinner, overnight, it really does change how much he needs.
ETA: The red line (low threshold) in this picture is 80.
But even the spike in your above image isn’t that bad imho. 150 is the top line it looks like…if he topped off there, that’s not horrible. Especially considering they typically decline pretty quickly after hitting the plateaus. We hit 40 and 50 plenty of times before we made the change of upping his low alarm at night simply because a) he doesn’t ever level out and stay level…he’ll keep going down (or up), and b) for us, a 70 alarm means he’s already low…in the 60’s, possibly 50’s. For us at least, correcting at 100 keeps his lows, when he does go low, only to the upper 60’s and only for a couple ticks.
I’ve became less worried lately about getting his A1C down to under 6% - I don’t think it’s a goal that I can meet with Liam because of this stage of his life. The ADA recommends toddlers be under 7.5% and we are currently around 6.4. I’ve decided that, for us, I’m not going to stress myself out about meeting some A1C goal that is just not going to be practical without a lot of severe lows. So Erin and I have decided that we are going to shoot for staying in the 6.5 - 7% range and let that be good enough. Any lower goal results (for us) in too many lows and that’s a short term risk that we’re more afraid of than the possibility of long term associated risks with a slightly higher A1C.
The ADA recommends 7.5% A1C with the caveat "A lower A1C target (<7.0%) is reasonable if it can be achieved without excessive hypoglycemia.) Right now we’re finding that sweet spot A1C where we can maintain it comfortably w/o going low a significant amount of the time. Right now our “lows” are 4.1%, and our severe lows are at 1.3%. We’re working to bring both those percentages down…that’s our goal atm, and in doing that, the A1C will move up to, we hope, between 6.5 and 7%.
I think those targets are very reasonable and roughly what we are aiming for (I would say my goal is just below 6.5% in the next year).
What we’re finding is that there’s a floor on A1C too – Maybe not 7, but I think getting Samson to below about 6.2 would be highly unlikely without many more lows.
We are also finding that his lab-drawn A1C tends to be a few tenths of a point higher when he has lots of lows (last A1C was 6.8 and yet his AVG BG was closer to 130, which predicts a much lower A1C). That makes me think Dexcom is overestimating how long and severe the lows are, which is contributing to an artificially low average BG. So for us, we think reducing the time spent low on Dexcom will, counterintuitively, result in a less surprisingly high A1C when we do the lab tests. Of course, it’s also possible his natural A1C just runs higher than his true average blood sugar would suggest, but we don’t think so because he was at 7.2 at diagnosis and has never been higher than 7.5, and Dexcom was consistently on the ball earlier on in the game, when he almost never ran low.
He’s been at 1.4% severe lows the past several weeks because of two months of a haphazard daycare situation, but that has been improving so we’re hoping to get that below 0.5% That’s my main goal for the next three months. I don’t care so much about the time between 55 mg/DL and 70 mg/DL, because given the lag in Dexcom data, I don’t trust that the number is real and he rarely complains of feeling low at those levels. But the below 55 time is when he actually tells us he feels low, and that I really really want to reduce. Plus, when he’s running low about this much, it just mentally feels like we’re constantly fending off lows, which gets exhausting.
It’s tough though because Mitch and I do have different management strategies. Even if we’re technically on the same page and agree on goals and guidelines, practically speaking, day-to-day, we wind up making different decisions, so it’s hard to set a single goal and both work towards it productively.
This really is the toughest part of our management also. Erin and I sometimes see things differently and that…discussion (sometimes to put it lightly)…is never enjoyable. In the end, we decide together on how best to proceed.
for us it’s more that we may agree in theory on certain practices. But then day-to-day, how we respond to things winds up not following those rules, and then we get different outcomes.
So for instance, we’ve both agreed to just treat Samson when he hits certain thresholds (say, less than 80) – but then there are those edge cases (he has lots of food in his tummy, he’s been flat with negative IOB for a while, he looks like he’s plateauing, we treated yesterday with the exact same food and wound up going hugely high) – and for each of those cases, Mitch and I make different calls. In general Mitch is more patient and willing to ride out both lows and highs for awhile than me and is more willing to let the artificial pancreas take care of things. I think I wind up with more situations where I am “proactive” but really was acting too hastily and that leads to a low or high later, but he winds up with more situations where, say, Samson is just hanging out in the mid 60s or the low 200s for an hour and he’s not taking any action.
Ironically, it seems like the average blood sugar that works out between these two management strategies is about the same. :).
