Request for help understanding a hypoglycemic event

[Eric]

@ianrobertdouglas

I had a similar experience. The biggest question Juno has voiced in his life, in fact. I was laid down holding him, to put him to sleep, and he said: “I will always have this, right baba?”

Words collapse.

I will do the best I can. The mental part of this, in fact, is what I’m maybe better prepared for, and I’ll certainly aim to be attentive to. Of course, I know I will fail. Just like every other parent in history. We’ll have our fights ahead, doubtless. I’ll make mistakes.

I will put faith in the embrace. It sounds facile, but I do believe that love helps us endure. Love, solidarity and hard work.

I don’t now how you answer that question, “I will always have this?". But one thing you can tell him with all honesty, is that no matter how long he has it, every year he has it, the disease will get smaller and smaller. And eventually it becomes so small it no longer matters.

In everything I do in my life, diabetes is always way down on my list of things to think about. It becomes automatic, no longer anything to be conscience about. Just like you don’t have to remind yourself to blink or breath or tell your heart to beat. If you work it right, it just becomes automatic.

Right now it’s formulas and calculations. And that is all you can do as a parent at this stage.

But eventually for him, it can become instinctive. And that is a much easier way to live. When he is ready, lead him in that direction.

I think that’s a good thing to tell him, no matter how long he has the disease.

[Nickyghaleb]

@Eric

I don’t now how you answer that question, “I will always have this?". But one thing you can tell him with all honesty, is that no matter how long he has it, every year he has it, the disease will get smaller and smaller. And eventually it becomes so small it no longer matters.

I think I’ll send myself off to sleep with this tonight.

@Eric

In everything I do in my life, diabetes is always way down on my list of things to think about. It becomes automatic, no longer anything to be conscience about. Just like you don’t have to remind yourself to blink or breath or tell your heart to beat. If you work it right, it just becomes automatic.

It’s what I’m learning to do now. @ianrobertdouglas, it’s the difference between being diabetic and having diabetes. One is the essence of you whereas the other is only one small part.

I’ve never met anyone who is less diabetic than Eric. Where I was fighting to make it my focus, he has been trying to teach me that it shouldn’t be. Forever is a long time, but it loses its power when we’re not afraid. I’ve been many kinds of diabetic since being diagnosed, and the type I am now is the kind I want to always be. I’m not afraid, and I’m not burdened. I’m not worried about whether or not I will have diabetes forever. I’m too busy enjoying today. Juno will get there, too. As will you and your family. Maybe you tell Juno you can’t answer that because you can’t. None of us know, and then you get him thinking about today.

I want to make you feel better. Juno will probably feel about it the way you do. Life is good. It really is. You guys will get there, and then you’ll be arguing about way more complicated things like why he can’t take the car.

[ianrobertdouglas]

@Nickyghaleb

and then you’ll be arguing about way more complicated things like why he can’t take the car

[ianrobertdouglas]

I want you all to know how much this thread is really helping me. I’m pretty much a one-man show out here, in some distant slipstream. I know it’s early days. Doubtless time will bring with it the ease of experience. Until then, I’m trying to intuit and feel amid what inevitably feels like a high stakes game. Because if it were me, no problem. But it’s my son. So I appreciate the collective kindness and patience.

@Chris

I would keep an eye on the 3:00 am - 5:00 am period and if you consistently have a downward trend for 3 straight days, you might want to adjust you basal insulin slightly.

When Juno was newly diagnosed, his basal dose (he’s on Lantus) was set at 18 units a day. But about two weeks in, an endo we saw briefly suggested to drop this to 17 units.

Math is not my strong suit. My brain is resistant to logic when it comes to correlations among numbers. But I want to double check, triple check, and ultimately understand everything, including how to arrive to determine a basal dosage.

Of course in lieu of catching up on my reading here, is it a matter of certain correlations? How does one arrive to a suggested dosage?

Thinking ahead, and if — and it remains a big if — I can get a supply of Omnipods back to Egypt, I don’t know anything about how basal rates for Lantus are converted to Apidra or any other fast-acting insulin, which I understand is what is normally used in any pump. I have a new friend here whose daughter is on Omnipod, so I would have practical support, as well as our endo, and I suppose pumps are all more or less the same, in terms of the fundamentals. Nonetheless, I’d like to get started in my basic understanding. If others know of resources that are especially useful, I’d love to know.

Bolus doses, I get, in principle. You look at rates of absorption. Figure how much 1g of carbs pushes BG. You try to match two inputs (food and insulin).

But basal — a kind of reserve and always present insulin — I don’t understand the big picture and what determines dosages.

[TravelingOn]

@Eric

I think that’s a good thing to tell him, no matter how long he has the disease.

Love those things. I love the idea of it becoming automatic.

[TravelingOn]

@ianrobertdouglas

I’m pretty much a one-man show out here, in some distant slipstream.

I think that many people here on FUD felt that way too. I know I’ve read many accounts of folks that had never met anyone with T1 in real life before becoming involved in the diabetic online community (DOC) and that it can be an incredibly lonesome experience. I’m glad you found this early in your family’s process.

[Michel]

@ianrobertdouglas

But basal — a kind of reserve and always present insulin — I don’t understand the big picture and what determines dosages.

It is not a perfect translation, but the closest you can think of it is how many units per hour you are using. So if your daily basal now is 18 units, it is about 0.75U/h, so that is, theoretically, what it would translate to on a pump. Most endos, though, would want you to take it down 10% to start, ie to about 0.65, or even lower, to make sure you don’t run low, because you can never know the translation for sure.

I am not sure if that made sense to you?

[EDIT] Just thought if something else you may not get: how you tuned basal. Essentially, basal is properly tuned when you are flat, whether it is as 80,100, or 200. The concept between basal and bolus is that basal is what keeps you flat of well tuned, and bolus is what makes you go down.

So, for example, if you are flat at 200 your basal is OK but you need bolus. If you are steadily going up and are right now at 100, you basal is too low. However, you cannot base your basal changes on how your instant trend is. You have to look at a stretch of time where there is no IOB and outside conditions are stable. Typically, you look at a whole day’s worth of data and check if your basal is likely OK.

The discussion on how to actually do basal testing is another one. The discussion above is primarily conceptual.

[T1john]

Here, mabey this link will help.

Rules of Engagement for Basal Insulin Adjustment (Or, Avoiding Basal Blunders!)...

[LarissaW]

I’m not adding anything important to the discussion here, but I just want to say that in the above dialogue there’s so many well-written perspectives from a caring parent, unburdened individuals with diabetes, loved ones here to support and help cope… just thank you for all being so honest and humble. I’m crying now because it’s really touching to me to view this disease through all these lenses

[TravelingOn]

Actually you can cry. I’ve done it a ton here at FUD! I just never have a chance to use that Bitmoji*, and I love it.

*if you are unfamiliar with Groucho Marx, he was a comedian. There was a set of novelty glasses made up to mimic him and function as a disguise. That is why my Bitmoji is wearing a pair of glasses and a small mustache.

[ianrobertdouglas]

@ianrobertdouglas

Cautious but curious about what will happen tonight

Just an update, in case anyone was wondering.

For the second night, Juno was very steady all night long. We skipped the half-unit bolus at 7pm for his light snack/supper. He was going down from 130 when I put him to sleep. Hit 85 and then rose to 110, where he stayed more or less all night. His lowest point was 75 at 5am, which to me is great.

I’m putting this down to the reduction of bolus insulin. Earlier, when he was on 4-7 units, we were both feeding the insulin, but also seeing high elevations and steep falls.

Now, everything is calmer, and much more predictable.

Hoping this repeats tonight, and onward.

It’s beautiful to watch a straight line with minor +1/-1 variations more or less throughout the night.

[bkh]

@ianrobertdouglas

But basal — a kind of reserve and always present insulin — I don’t understand the big picture and what determines dosages.

Here’s the big picture. The body always needs a bit of glucose in the bloodstream to power the processes of staying alive: thinking, breathing, heartbeat. Supplying this background energy is the job of the liver, and it supplies however much it thinks we need. That’s not a constant amount, it can vary depending on lots of things like time of day, stress or illness, and so on. Now to move this background supply of glucose from the bloodstream into the muscles takes insulin. That’s automatically handled by the pancreas in a non-diabetic, whereas in a diabetic we need to supply that “background insulin” to use the background glucose. That’s what basal insulin is.

The basic idea of setting a basal insulin dose is to adjust it so that the blood glucose tends to stay level: it doesn’t seem to rise all by itself or fall all by itself. That can be a little hard to see, since BG rises and falls for so many different reasons (the biggest one is eating carbs, but also stress, illness, hormones, and exercise among others.)

With an insulin pump using fast insulin, we can adjust the basal to be different amounts at different times of day if there are routine patterns in the BG. In my case, for instance, I need much more basal insulin at night than I need in the daytime — about 3 times as much. But this varies for everyone and for some people it is the complete opposite, where they need much less at night. You just have to see how much your individual body needs, or Juno’s in this case.

With injections of slow “basal insulin” such as lantus we have to pick one hourly amount of basal insulin, (or maybe a “day dose” vs a “night dose” if we use levimir which doesn’t last as long). So aim to get an amount that doesn’t let your BG go way high or especially doesn’t let it go low overnight. That’s just a matter of making small changes and seeing whether there’s a tendency of the BG to rise all by itself, or fall all by itself. For example, in the CGM picture you show at https://cdck-file-uploads-global.s3.dualstack.us-west-2.amazonaws.com/flex030/uploads/fudiabetes/original/2X/d/d1b38f4a8953230d1db5ead9d8e03f8eb39a706f.png
it looks to me like the overnight shape is a gently rounded hump, with the high point around 1am, and then from there it falls until about 6am. In that area from 1am to 6am the BG is “falling all by itself” approximately from 120 down to 75. On a pump, if I saw that pattern for 2 or 3 days I might decrease the basal rate a tiny amount, like a decrease of 0.025 units per hour, and watch what happens over the next few days. Does that make it better? Do I need to reduce it a tiny bit more, or leave it where it is, or go back a bit higher?

With once per day basal you have to focus mostly on avoiding overnight lows, and second on avoiding overnight highs, because maybe nobody is awake to deal with it, whereas in the daytime we can do corrections with glucose or insulin.

Analyzing this can get as detailed and complicated as you like, but when you need to cut through the confusion just remember “if your BG is too high, you need more insulin” because that goes back to the basics.

[Nickyghaleb]

@LarissaW

I’m crying now because it’s really touching to me to view this disease through all these lenses

hugs

[Nickyghaleb]

@ianrobertdouglas

Math is not my strong suit. My brain is resistant to logic when it comes to correlations among numbers.

I can’t deny I’ve always had a thing for numbers, but it wasn’t my strong suit in the beginning either, but my math muscle, out of constant and repetitive use, has really filled out. Actually bulges a little. Turns out it can do that. If numbers are what is important, you get better at seeing them.

[ianrobertdouglas]

Thank you @bkh That really helps, and I appreciate you taking the time.

I’m seeing some pronounced downward pressure in Juno’s chart today. A sharp drop at 2pm (during school hours, Juno does not take bolus insulin), which levelled out, but then a slower but more sustained drop at 5.30pm, that I corrected at 64 -3 with strawberry milk. And again another slide now, a couple of hours later.

It is certain that Juno’s insulin sensitivity has gone up, which I take to indicate that some residual pancreatic function has returned. I’m wondering if I should drop his Lantus basal from 17 to 16 units tonight.

It makes sense that if he is more sensitive to bolus insulin, he may need a slight downward adjustment in basal insulin also. But obviously I don’t like guessing.

This is why I was asking about basal dosing, and wondering if there was a set formula for establishing optimal dosing.

[Chris]

@ianrobertdouglas

wondering if there was a set formula for establishing optimal dosing.

No formula, art rather than science in this case. If he is trending downwards without food boluses being involved you should reduce the dose. The amount you indicated (1 unit) is a good starting place. Our endo wants us to make basal changes in no more than 10% increments.

Also, if you find that his days and nights have a different basal need, you can split the dose into morning and evening (12 hours apart) to have different night time and day time basal amounts. It isn’t perfect but it gives you a bit more control. You probably aren’t at that level of refinement needed yet, but know that it is an option.

[bkh]

@ianrobertdouglas

I’m seeing some pronounced downward pressure in Juno’s chart today. A sharp drop at 2pm (during school hours, Juno does not take bolus insulin), which levelled out, but then a slower but more sustained drop at 5.30pm, that I corrected at 64 -3 with strawberry milk. And again another slide now, a couple of hours later.

Good eye.

@ianrobertdouglas

I’m wondering if I should drop his Lantus basal from 17 to 16 units tonight.

Good plan.

@ianrobertdouglas

This is why I was asking about basal dosing, and wondering if there was a set formula for establishing optimal dosing.

Nope. That’s part of the burden of diabetes: you have to just tweak and tweak until it’s working ok, and then the body will change on you and you need to tweak some more. It’s a continual process of review and adjust. For me the usual trigger is I’m getting too many high alerts or low alerts, which is my clue that I should look at the graphs and try to figure out what’s happening and what to do about it. Like if I’m generally going high 2 or 3 hours after meal, I start to think about adjusting the insulin:carb ratio for meal bolus. If my correction boluses aren’t bringing my BG down enough maybe I start to think about the correction ratio (or insulin sensitivity factor, same thing). If my BG is rising all by itself hours away from eating I may tweak the basal insulin. It’s not always clear which of these 3 knobs to turn; as Chris said it’s an art. Over time you’ll get used to figuring it out. And then before you know it Juno will be taking over.

[ianrobertdouglas]

@bkh

… you have to just tweak and tweak until it’s working ok, and then the body will change on you and you need to tweak some more. It’s a continual process of review and adjust.

Again, thank you. This whole paragraph is very useful.

I can see how Juno’s baselines are shifting. We had a couple of steady days. Today, I’ve been fighting consistent downward trends. Right now, as he sleeps, it has gotten worse. Whereas these last few days I was able to trust his body when he was dipping into the 70s, as always the curve would bottom out, now it’s just continuing to go down. Gently (-2 mg/dl), but inexorably.

I hate to wake him, and I hate to spike him artificially, but I’m having to, to compensate for and estimate the decay over time, so he can get through the night.

Notwithstanding periodic shifts, which may even be within the same day, and that can relate to all kinds of exogenous factors, from types of foods to exercise, hormonal shifts, growth spirts in children, etc, am I correct to think — in principle, at least — that if the basal dosage is correctly dialed in, he more or less should remain flat with no significant decay in his numbers over time?

A couple of nights ago, I’d be seeing -0, -1, -1, -0, +0, +1, +0, -0, -1, -1, +0, +1, etc. Basically, almost a straight line.

Right now, -2 or -3 all the time. Just a downward curve.

He has no bolus onboard since over 8 hours. And I did take one unit off his basal. Seems that tomorrow night I might have to take another off.

[Chris]

You are doing the right thing. Two thoughts. First, after the honeymoon ends things get more predictable. Second, if you have a juice on hand your son will probably be able to drink through a straw without you having to fully wake him up.

Good luck, we are here with you.

[TravelingOn]

@bkh

just remember “if your BG is too high, you need more insulin” because that goes back to the basics.

Excellent summary @bkh! I’d like to add that insulin takes a while to kick in, so if you’re trying to figure out when to adjust your basal rates, and you happen to be using a pump, you’ll want to plan on making that change a little earlier than you see the resultant pattern.

Even without a pump the basal/long acting insulin adjustments can take a bit to “kick in”.

I recognize, you do not yet have a pump, but if you do have one – it’s going to remember that it’s not instant. I have a feeling this thread will be useful for many newly diagnosed T1’s. So I thought I’d add that.