You’re doing it right.
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Quick question: Is it possible that lowering basal insulin could have the opposite logical effect, pushing the overall curve down?
Last night I struggled to keep Juno from going low. Even the muesli biscuit that at the weekend would lead to a 70mg/dl rise in his BG had little sustained effect.
At 5.45am we get the Spike app urgent low alarm at 55. He ate and drank, but reached 44 before he started pulling up.
Today, I’ll keep him home from school. With an iPhone and Apple Watch he’s able to see his levels all the time, and via Nightscout so am I, but still. His school is unprepared as yet.
[Edit] Scratch that. We need to be able to cope with days like this; it is the reason he has the G6, the iPhone and the Apple Watch, and I have his levels on every screen I have.
The controlled low we did at the weekend is really helping me roll with what’s going on, but obviously I’d like to get some basic stability in his 24hr trend as soon as possible.
We have to wait until 9pm (around 12hrs from now) to set the next basal rate.
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It really sounds like the insulin therapy has taken the pressure off his pancreas and it is working fine. You may even end up with little to no basal insulin. Keep following the trends and doing your best to keep up with the therapy. His immune system will kick in eventually and stop the madness.
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I agree with Chris’s thought. Typically you discover type 1 when the pancreas simply can’t keep up with the demand for insulin because too many beta cells have been destroyed. Then when you start insulin, it reduces the stress on the remaining beta cells, so they may be able to (temporarily) recover some function rather than being in a continuous state of exhaustion. Just keep adjusting the insulin dose to move the BG in a good direction. It may be a little while before things settle down.
Reached 44 on the CGM? The CGM tends to overshoot at turning points, especially during fast moves, so it may not have been quite as bad as it looked. In any case, think about what to choose for an “emergency” lift in BG. Fastest is glucose, such as glucose tablets. Sucrose is reasonably fast, although it requires a small digestive step to separate the sucrose molecule into the glucose and fructose components. Anything more complex with fats or proteins will take longer to digest before lifting the BG. If it’s not an emergency, you’re just changing the trend of a slow fall, pretty much any carbs will be fine, and some would say the tastier the better. (docslotnick says “Never waste a good low.” If I recall, he goes for doughnuts, others may prefer chocolate or cookies or various candies.) The trick, of course, is to get a correction without overshooting. That’s just a matter of experience after you watch the CGM a while.
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Thank you.
Glucose tablets, unfortunately, are not available here in Egypt. It surprised me, too, but it’s a fact. For a fast upward jolt, I’m using Skittles. Pure orange juice seems smooth but fast-acting with Juno.
Yes, it was 44 on the CGM. Twice now I don’t have presence of mind in the moment to reach for a meter. I agree that on the margins the CGM loses accuracy. In the 80s, 90s, 100s, nonetheless, the G6 is remarkably accurate so far.
So the main issue right now is the consistent -2 mg/dl decay rate at night. I was just reading the piece There is no 24-Hour Basal Insulin by Richard Bernstein. I was surprised to see the significant difference in basal dosing he prescribes.
Instead of 21-28 units for a person weighing 154lbs (or 0.3-0.4 units per kilo), he advises 12.5-15 (or 0.17-0.2 units per kilo).
For Juno, this would translate to 7.3-8.6 units as a 24hr basal dose — quite a dramatic downshift from the 16 he took last night, down from 17 these last two weeks, down from 18 initially prescribed.
I was going to go with 15 units tonight, but I’m considering a more robust reduction, with careful observation of course.
Maybe 14 tonight, 12 tomorrow night, and settle on 10 thereafter.
I’m watching his numbers and trying to decide. Essentially don’t want a repeat of last night. Something’s wrong if he’s reaching down around 50 at 5am.
You should generally be more aggressive lowering doses than you should be at increasing doses until you get the hang of it. Unless you son is eating extremely low carb which is what Dr. Bernstein advocates, I would think you will need more basal.
By aggressive I mean, you should feel ok lowering every night a small amount until you get it dialed in. Our endo wants us to wait three days between basal changes, and while I generally do follow this advice when raising basal, I don’t follow this advice when lowering. I usually only wait one or two nights.
I would advise to just keep a reasonable pace of adjusting his doses rather than doing really drastic things until you understand how everything works in your son.
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I agree with Chris here.
And personally I think your plan sounds good:
15 or 14 units should hopefully help prevent that overall downward trend overnight and let you both get a full nights sleep. In my opinion, you would rather run a little higher than lower overnight.
Of course, after tonight with whatever adjustment you make with basal, you’ll have to see how it affects his numbers overnight before deciding on reducing it more (if necessary)
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Have you considered laying it out? Like setting the meter up somewhere impossible to miss? On the floor in front of his door or maybe in the cup you use for OJ? Just until you train yourself?
I like the CGM but at low points it can have a fair number of points worth of difference.
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It’s a good idea. I have a small table with a juice and biscuit ready. I just should get into the habit of leaving the meter there, also.
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One other thought I just had, you can also adjust the time of the basal insulin shot. If you are giving basal before bed, you can move it to the morning. You are using Lantus if I remember correctly, and this doesn’t always last a full 24 hours in everyone. It does in some people, but not everyone. You could move the time of the basal shot to the morning, thereby making the basal less effective at night without changing the dose.
Also, if possible consider getting a second meter, it is good to have a backup and then one can sit on the bedside table all the time.
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Yah, also if your son or wife/partner ever needs to find it in a pinch, locating it will be easier.
And @Chris is right. An accessible back up with functioning batteries and a supply of strips is smart.
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Yes indeed. I have three, in fact, counting the Libre reader. Next week, ketone strips and another meter coming from the US.
After the relentless downward slope last night, Juno today was surprisingly stable. Higher than I’d like, but solid. Tonight, a good six hours between 115 and 140.
He’s slipping now, however. 3.40am and he’s down to 89. A dip at this time almost always happens. So I look forward to the kind of control Omnipod would give — if I can get it — in addressing predictable patterns.
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Don’t be in such a big hurry, learning to manage everything well with MDI is very helpful when transitioning away from a pump for awhile. My son spends at least one month a year using MDI to prove to his Endo that he can do it. Also, during the unpredictable honeymoon, you will just forever be chasing things.
Additionally, pump sites failing is a big thing for us, so much so, that we use MDI plus pumping very often.
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Agreed. The last thing I want is for Juno to become technologically dependent. He/we need to build wide experience, including with the most basic mechanics. I love the idea of taking a month off, switching things down, even if and when something like Omnipod becomes the default for him. As he gets older, and as his consciousness relative to feeling and intuiting his body develops, it will be vital to drive the car manually. You can’t perfect your gear changes with an automatic transmission.
Nonetheless, and as I’m sure as a parent you understand, I’m eager to use whatever tools I can get, and as fast as I can get them, to hit the ground running with optimal health for my son. Regarding the Omnipod, even if I got it tomorrow, I’d still have several weeks of research and reading and asking questions to do. It’s not that I think I can attach it, sit back and forget any of this ever happened. But I do think it would help him. Including now, when he’s honeymooning. We don’t even have official diluents here. Just saline in plastic bottles. I want to respond to his body and follow it. This means micro bolusing, and fine-tuning his basal.
Let’s say a mix between machine-based learning and mechanical understanding is what ultimately I aim for.
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I can send you some if you need it. I have a bunch of vials.
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Thank you, Eric. I’m trying to find out from Sanofi-Aventis if a diluent for Apidra exists, but I also wrote to the email you included here asking about sources in Cairo, as Humalog is also an option. If nothing comes back, I’d be much obliged.
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Or it suggests a cultural difference, that you buy only what you need now, rather than stockpiling an excess. Sort of like how you can buy one rib of celery in Italy, or a few slices of bread. I’d be happy to buy one lancet every ten years. Man, with those savings I could buy myself … another lancet! 
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Extracted from an official response on Apidra:
Not sure if that means they just didn’t bother to manufacture something they’d be obliged to put through clinical study, or whether you really shouldn’t dilute Apidra for SC use, because its particular pharmacodynamic profile is one that could readily become unstable.
Are you guys using omnipods? The 0.05 units is too much?
There is a bit of a difference between diluting and injecting right away, and diluting and letting it sit in the same infusion site for 3 days. I don’t think the problem is insulin degradation, but rather the problem is site degradation.
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Not so far, but I’m working on making that happen.
In the interim, I was looking to find a way to dose at 0.25u but with a pen, like the HumaPen Luxura HD.
I think it’s a good thing to know how to do in general, but in Juno’s case it feels to me important not to overload his system with exogenous insulin right now as seemingly he regains at least some pancreatic function.
At least this is how I’m interpreting his dramatic increase in sensitivity to insulin.
But it wouldn’t necessarily have to be Apidra. I read that the differences between Apidra and Humalog are barely noticeable, so the Lilly diluent would work. Still waiting on a reply from that company on sourcing it in Cairo.
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