Adapting treatment philosophy to puberty

My son entered puberty a few months ago, right after Xmas, and the consequences have been difficult to adapt to. We now see sudden hormonal peaks at some time of the day or the night, most every day, at least once or twice, springing straight up, out of nowhere, and reaching 200-400 in a half hour, before any insulin can be brought to start squashing the peaks.

I made some math calculations and figured that, if you want to remain below 6% A1c, you can’t afford puberty peaks AND postprandial peaks AND upward drifts.

We can’t do anything about hormonal peaks – they come when they come, and we can only squash them as quickly as we can. So we have focused on postprandial peaks and BG drifts.

Postprandial peaks
We now try to totally eliminate post-prandial peaks, particularly for dinner. When I say that, I mean we don’t want anything to go above 130 at any time after a meal. We are successful about 80% of the time. The way we now do it is:

  • of course, we bolus ahead, approximately 40 minutes before a meal

  • we wait until the BG has “turned the corner” to eat

  • we stage a part of the meal for later. For instance, we plan on a certain amount of desert, but we don’t eat desert until he is almost low. That’s when we eat desert carbs. Dinner typically takes 1.5 hours before he has eaten everything, but it is staged, really. He will be doing his homework after the bulk of dinner, then, when he gets an alarm at 75, that is when he eats desert.

Drifts
We aggressively dose for upward drifts. We make 1/2 unit corrections often, and attempt to aim to be under 100 rather than 120. So, if a 1/2 correction is good for 20 mg/dl, we will correct at 120 to go back below 100.

Hormonal peaks
While we know we can’t suppress them, we have also been aggressive in bringing them down. We are still in the process of learning how to deal with them best. What we typically do is to catch them right above 130 (with an alarm at 130) and dose immediately, with a formula that depends upon the slope of the peak – the steeper, the higher the correction. It is not always possible to do so in the way I just explained, in particular if you are not 100% sure that you are facing a hormonal peak vs a food peak.

The results
So far, we appear to be holding steady on A1c. Our last A1c two months into puberty was actually a little better than before, 5.3%. But we see these peaks getting steeper and more frequent every week, and we don’t think we will be able to hold these numbers forever.

As we know, though, the A1c is not the only thing to look at. Every other metric is worse than before. With such frequent peaks, SD has worsened a lot. it was around 25 “before”, now it is typically around 35. Time In Range has also worsened - it used to be around 95%, it is now typically between 80 and 85% (we use 70-140 for time in range stats). Finally, time in hypoglycemia has also worsened, going from 2.8% average to close to 5%.

So you may ask, with all the metrics going south, how are we able to maintain good A1cs? The only way that has worked for us is to essentially lower our averages, when we have no peaks. Beyond getting rid of most postprandial peaks, we run lower than we used to. Not ideal – but, worse, it is not clear that it really helps: with such a high SD, probably getting worse, it is not clear that a low A1c is any better than letting him run a little higher on average. It is possible that the peaks are what damages him, in which case what we are doing (outside of reducing postprandial peaks and aggressively going after hormonal peaks) may not be improving outcomes.

Still, since nobody knows any better, we figure we might as well optimize all the metrics we can. There is, of course, one potential drawback: running lower, we risk more hypoglycemia, in part because we are willing to dose higher rather than lower on insulin, and catch the fall of the curve with carbs.

There is one more negative consequence that I was not expecting. With some many peaks day and night, it has become harder to get good calibration for his CGM. There are just not that many flat sections on the curve.

So, as you see, puberty is a bear :slight_smile: We are learning as we go, and are getting better – but I can see that the next four years are going to be a tough fight: the enemy’s tactics have developed into new directions that we are not able to control as well as we used to.

Still, I am optimistic. Surprisingly, my son is not getting frustrated, I think in great part because we treat every day as a scientific experiment. Conditions are so hard (and becoming harder) that whatever we learn now will give him really good control after puberty is passed.

Eventually, it will get easier!

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@Michel, just wondering why you and your family are shooting for such a low A1C? It’s a great number but isn’t 6 or even 7% also good? I guess one can never go too low? Just curious… Definitely something I’ll be referencing in another 10 or so years for my own son! Packed full of good info!

@ClaudnDaye, I think the logic is that people with prediabetic A1Cs are at elevated risk of heart disease and other problems. So that suggests negative outcomes associated with elevated BG follow a dose-dependent relationship. Presumably, you want your blood sugar to be as close to the normal range as possible. Also if you look at data from the gold-standard trials like DCCT, I think there’s a big “bend” in the data where risk factors do decline at 7% but the risk of complications is still quite high at that level. Because those trials were run so long ago, people with an A1C of, say 5.4% were likely running low ALL THE TIME, so we can’t really look at those people to see what having a lower A1C with no risk of hypoglycemia does for people with T1D. As a result, we don’t have long-term data showing that people who maintain normal A1Cs have lower rates of complications than those in the high 6s. But the idea is that it stands to reason. An A1C of 7% still means your average blood sugar is nearly DOUBLE what a healthy person’s fasting blood sugar is. And we know that in a healthy person, their blood sugar drops below 120 about 1 hour after they’ve eaten, and is below 100 almost the rest of the time.

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Personally, we don’t have an A1C we shoot for. I mean we want it to be below 7% at the bare minimum, but I see it more like a video game with rolling targets.

As soon as I hit 70% in range at some target setting (say 70-160), I lower the upper threshold by 5 or 10 points. If I go below 60% in range within a target range (say 70 -150), I raise my targets. I always aim for less than 0.5% of time spent less than 55 and my secondary goal is to have to give him less than 1 gummy or glucose tab a day to head off a low (we often don’t succeed at that). So for me it’s very much a moving target that adapts to the circumstances. When my son is having terrible blood sugar we widen the targets, when he’s running tight we try to optimize those periods and string together as much good, in-range time as possible.

I also use a lot of the tricks Michel does – overbolusing for a meal anticipating a second course or snack later, bolusing for nighttime spikes as soon as he’s up arrow and over 140, although our target is 110 rather than below 100. Even with that, our standard deviation in a good 2-week period is 45 and in a bad one can be closer to 60 – so you can see that we are much less successful. And that’s WITH an artificial pancreas!!

Right now (after having two horrible days where our son was simply “HIGH” – close to 600 – for four hours after breakfast) our average BG for the last 3-months is 139. I’m hoping the A1C reflects this at his upcoming appt but am anticipating it will be higher because the high streak was more recent than the good BGs, and A1Cs tend to overweight the more recent BGs.

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I was about to comment on this

and TiaG kinda said what I was going to say: [quote=“TiaG, post:4, topic:366”]
Personally, we don’t have an A1C we shoot for.
[/quote]

Same for me. There is nothing I shoot for as far as an A1C.

I try to have the lowest BG at all times without it being unsafe, and without having to alter my life. That is always my goal. The A1C just comes out.

Would love to discuss this on a thread sometime!

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Depressing to be attempting to learn and apply what I’m learning but not getting the outcomes I want…I had our son under 7%…6.7 or so then new Endo recommended I scrap what I had created. Last visit (first after new changes) his A1C was 8.5. we’re getting those numbers down now but I just sometimes feel like the 5’s are just a dream for us. I try to stay optimistic but it’s between a year now and it’s like we’ve made no progress. Learning so much from you all which I try impliment for my own son but I don’t get the same results. Sometimes it’s just disheartening.

Diabetes is so frustrating…

I don’t really have a goal in mind: I am shooting for him to be as close as possible to a glucose-normal track. It is not attainable, of course, but it keeps us on our toes.

+1. Much of what medicine has told us about daily life has changed radically in the past 40 years, and will likely change again. When I was a kid, we all ate margarine because it was supposed to be healthy. Eggs were in. Then they were out. Then they were in again…

So I am a bit mistrustful of anything I am being told that does not pass basic common sense. Most doctors say that under 7% is good enough. But, when you look at retinopathy, for instance, there is some correlation between diabetes and increased problems that starts at 5.5% A1c. As @TiaG said, a 7% A1c is double normal fasting rate. In fact, at 5.5% A1c, you are way over the 100 level that is considered upper limit of normal.

So, not knowing any better like everyone else, I figure the safest I can do for him is to keep him as close to normal levels as I can.

+1. If I could keep him safely below 5% I would. Every day where his track looks like a glucose-normal’s track is a victory – there are very few these days :slight_smile:

But I am optimistic that, past puberty, those days will come back. Puberty is great training because it is so much harder. And we are not even in the heart of it yet :slight_smile:

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There is a lot to learn (and I must be a slow learner, because I am still learning after all these years!). But you can do it, I promise.

Let’s start a thread and work through it.

I have used this analogy with people on the site I have spoken with. If you have a choice between flying in a plane with a pilot who has never flown a plane before but studied airplanes and got a degree in it, OR you can choose a pilot who never got a degree in flying it but has flown every day for years or decades, who would you choose to be your pilot?

The people here are flying the plane every day. We can help you with things Endos don’t know.

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You will get there. Honestly you had a big set back in that your doctors for the first 4? 6? months of your son’s care had absolutely no interest in keeping him low and offered no guidance. So think about it as if you’re still 6 months or 8 months out from diagnosis, in a way.

I think for folks like us, with toddlers, it probably IS unrealistic to get into the 5s just yet. For us, it would mean that I would have to be with my son all the time and that other life pressures would never take precedence. And we’d have to tolerate a lot more lows. Or we’d have to go low carb.

I wish I had the bandwidth to do a math proof or something, but I suspect that when you have a combination of a very high ISF and low basal rates but roughly equivalent carb sensitivities to an adult, that set of parameters is intrinsically more unstable than those for an adult. Unstable meaning you’ll have more “perturbations” in the system and the damping is low enough that spikes and drops take a lot longer to decay to the steady state.

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The problem we are having at this stage in our sons development is that our best laid out plans mean nothing if he doesn’t cooperate. At 3, he doesn’t understand that his life depends on him eating after being bolused… When he doesn’t want a specific food we’re often left scrambling… Most recently we’ve started bolusing him AFTER he eats so that we aren’t feeding the insulin… And so that we bolus fit only those carbs he decided to eat. If we bolus him and he doesn’t eat, we’re left with feeding him whatever he will eat to prevent the lows…

Looking forward to the months and years ahead of cooperation from him after he understands.

The people here are flying the plane every day. We can help you with things Endos don’t know.

Can’t agree with this enough. Did i mention that even though we have our own philosophy about what range to target, we never tell our Endo “we’re trying to get our son as low as we safely can.” She says the target is 7% and we smile and nod. She makes changes to our settings and I always make sure to have the old ones in a spreadsheet first so we can go back quickly if things don’t pan out with her settings. I see her as an important sanity and safety check and a source of medical insight for things like complications and what to check, but don’t expect she will know the perfect settings to keep our son in range.

I’m also totally willing to offer help and suggestions too if you need them.

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Lows are considerably more damaging to toddlers due to their brain development still undergoing construction. It’s for this fact alone that I’ve become more tolerable toward highs over lows. We still have lows even though we fight to avoid them though.

I’m always looking for helpful advice. I don’t want to be responsible for killing my son… Or shortening his life span… That’s what keeps me awake at nights.

Michel,

You and your son are obviously doing very well managing this as evidenced by your numbers. My son is 14 and we have been solidly in the puberty hormonal swings for over a year. Just this week we had three days where we struggled to keep him in the 250’s despite throwing a ton of insulin at the problem, then suddenly it disappeared and he has had perfect control for 2 days. It is frustrating, but it is the way things go.

One thing you may be on the doorstep of, is your son’s independence. Our son is already starting to pull back from his mother and my advice. He “listens” to us, but often will do what he feels is right rather than what we feel is right. While I know that this is the correct thing for his growing independence, it is not as cool with our diabetic child as it was with his older brother. So i guess what I am trying to say is, hopefully your plan will be fully indoctrinated prior to the independence streak, but if it hasn’t then you may need to adjust your expectations.

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I understand the added difficulty of him being that age. I have two boys that were 3 at one time also!

Those aspects are definitely things that other parents can help you with. I know it’s tough being held hostage by the bolus!

Maybe you have an idea of what he likes to eat and what he does not like, or you can start to gauge how much he will eat by asking him ahead of time. One thing I did with my boys was let them put the food on their own plate and decide how much they wanted, but the only rule was - if you put it on your plate, you better finish it!

I promise, it gets easier every year…until he turns 16. :wink:

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Yes, we do this. The problem with this; however, is that… What he says he wants, and what we prepare for him and bolus him for, he doesn’t really want. He just says he wants it… If they makes sense. And sometimes when we ask he’ll go through the entire list of foods were have to offer him.

Btw sorry to hijack your amazing thread @Michel! That wasn’t my intent! :frowning:

Something that helps in general is a slightly higher basal before the meal - then the bolus for the meal will hit quicker. If he doesn’t eat as much, the slightly higher basal is easier to recover from.

The benefit is that if you bolus after the meal, your postprandial spike is not as bad. The risk is minimal, you have to feed just a little bit to cover the higher basal.

This is easy to do with a pump. Try it. I think you will like it.

This thread makes me thing we need a new emoji…

:joy: Just funnin’ you of course. Any sharing of thoughts is good stuff!!

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Like this?

:hijacked:

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Michel, you’ve been
:hijacked:
:grinning:

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@Eric @TiaG
Can’t agree more. My last endo in California whipped out the study that showed the long term mortality graph for long term T1’s. Optimum A1c in that study was 6.8 for +25 year T1’s. She said I should give up my Dexcom because my A1c’s were too low, hence I was more likely to die.

I was polite, said thank you, and continued to keep my A1c between 5.5-5.9. And I certainly kept the Dexcom.

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