FUDiabetes

Request for help understanding a hypoglycemic event

Agreed. We overcome fear by knowledge, I think. At 9, he’s old enough to see the reality of what is around him, including me working hard to understand his condition and manage it, but too young to make his own decisions yet. I cannot hide from him my learning curve, and I need him to follow along with me and learn as we go. Honesty is also vital in our relation. But along the way I try to teach him that in principle nothing is insurmountable, and that we will work to put his condition where it should be: in the background.

My wife had similar concerns when I was organising to get the G6 and an Apple Watch. She feared that it might consume him; that he’d always be checking, and live in fear of his numbers. I see that perspective, but on the contrary, I feel that when you shed light on something, make it normal, and have information to hand, you get the chance to step out of its shadow.

I will try to become strong. And I will work that Juno remains strong. We will do it with effective tools, experience, analysis, honesty, knowledge.

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And forgiveness. Because for some of us, no matter how hard we try, no matter how many years we’ve been at it, there will be the completely unexpected and inexplicable results, and you have to be able to accept those and move on without dwelling on them, without beating yourself up with “I should have expected that, I should have known better.”

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Nicely put! Landing a perfect correction, imho, is somewhat haphazard when you come from a big high: you feel good if you land perfectly, but you should not beat yourself up if you land too low, or too high, or overtreat the low.

But it is always worth celebrating the perfect landing :slight_smile:

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That is a valid feeling, but attribute it to the novelty of the situation—it’s not inherent in dosing insulin. When I take a bolus, about half the time I overdose, and the other half of the time I underdose. Getting it exactly right is too hard. But it doesn’t matter, especially with the aid of the G6. Just dose the insulin and watch what happens. If it was too much insulin, the BG will fall, so eat some fast carbs. If you don’t notice the falling insulin, the G6 will alert you. Similarly, if it was too little insulin the BG will rise, so take a bit more insulin to solve it. Provided that you ensure that your son always has fast carbs immediately available, errors in dosing insulin are nothing more than a nuisance. Blood glucose levels wander all over the place for many reasons (there’s an article that enumerates 42 reasons https://diatribe.org/42factors ). Consequently we learn just to keep pushing it in a good direction with added carb or insulin — tedious to be sure, but not any kind of safety issue once you’ve figured it out.

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@ianrobertdouglas, @Eric did a super-useful thread comparing all insulin pens. Even of you can’t find a Echo you have other choices I think:

Insulin pen comparison

Also, you could order the pens you need from Mark’s Marine Pharmacy in Canada if they have them (they likely do), except maybe for the Echo, which is more expensive.

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Thank you, Michel.

I was reading yesterday another superb thread by Eric on Filling your own pens. Today I went to Kasr El-Aini (an area in Cairo where pharmacies and medical suppliers converge, because of the hospital there by the same name) trying to find a pen with 1/2 units. Failed. The Echo is not in Egypt at all, and nothing else available had half-unit doses. But tonight I was seeing Juno’s endo and mentioned it and she reached into a cupboard and gave me a HumaPen Luxura HD! The same Eric shows so well how to hack and refill.

Juno has been on Apidra for bolus insulin, but the cartridges are filled with Humalog. I need to read and try assess whether to move him over or still with Apidra. I’m told Apidra doesn’t come in vial form here — only the Solostar disposable pens. As we have no insurance or anything like that I was hoping that the refillable pen would prove cost efficient in the long run. But without vials, it’s moot.

Today I did some testing to try to dial in Juno’s carb rise rate, carb to BG ratio, and insulin sensitivity. For the latter, I did a test on one unit of Apidra starting from 177 mg/dl and stable (+0 mg/dl) and letting it run. Sixty-five minutes in, when I pulled the plug, Juno had fallen 130 mg/dl, to reach 47 mg/dl with still a downward trend of -4.7 mg/dl. It was slowing and levelling out, but I’d seen enough. Juno felt nothing.

Astonishing to me, still, that just a few weeks ago Juno was bolusing 7 units of Apidra with every meal.

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What really happened there is that, after all his beta cells shut down when in DKA, once they got the respite of basal insulin, a couple days later they started cranking again.

Do you mean from a cost point of view? Because you can refill insulin starting with disposable pens or cartridges too.

Btw, how much does insulin cost in Egypt?

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Yes.

I don’t know, but I’m assuming that a vial is cheaper, unit for unit, than a disposable pen. But maybe not.

The cost of insulin in Egypt, comparatively, is low, but so are wages, including mine. These are the ones I know, and I can ask for others if anyone is curious:

  • Humalog cartridges (box of 5): 325LE ($18)
  • Apidra disposable pens (box of 5): 250LE ($14)
  • Lantus disposable pens (box of 5): 630LE ($36)

Test strips appear to be normal Western prices. And if you go to a pharmacy and ask for lancets, depending on where you are, and which pharmacy, they will sell them individually, which suggests that Egyptian diabetics don’t test themselves too much.

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These are very good prices!

Regarding CGM and pump, in my opinion, being on MDI until puberty works as well as pump, but the CGM makes a big difference.

During puberty, the pump is very helpful, but the CGM much more. Really, to me, the CGM is the rock on which to build good treatment. So I think you should not stress out about pumps.

Have you looked into the Freestyle Libre in Egypt? It may be much more affordable. Although without the alarms and follows it is quite a difference at night.

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It depends where, really. In the US, some insulins have practically the same pricing btw vials and pens, and others have a big difference. When I was in Canada I price checked as well. For the insulins I purchased, there was no difference. So I think every country, region and manufacturer may be different.

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If money is tight, you can probably use the Humalog before refilling with Apidra. We have switched insulins to see if there is any difference for us, and have found very little difference for us despite the brand, with that said Apidra and Humalog are different chmically and we haven’t tried Apidra so we don’t know how it works.

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I had a Freestyle Libre for a little less than a week. Paired with MiaoMiao, it was semi-functional, but patchy. I found much wider variations between the Libre and fingersticks, and at the time I couldn’t get xDrip+ to work, and while Glimp was good, I couldn’t calibrate and get a median I could rely on. The G6, in contrast, appears much more accurate, and I feel confident in it. Spike works great with it.

Now I have a HumaPen Luxura HD, I’ll decide whether to dispose of the Humalog and refill with Apidra or switch, but hopefully start administering 1/2 units. I know it’s going to be a long time until I can accurately assess how many carbs are on a given plate, but having more fine-tuned control will probably ease my mind some.

I do understand that MDI could well be as good as a pump right now, and certainly is far more affordable, but I would like to move Juno to Omnipod if I can.

I can see on his face what is in his mind every time he hovers the pen over his belly for his injection. Sometimes he asks me to fire the lancing device if we’re doing fingersticks, because he’s scared to.

Minimising injections may seem small, but if it helps him, I want to do it.

That plus, looking ahead, getting used to Omnipod ahead of the arrival of a means by which to loop with it.

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Nah, there’s some old timers here who’ve had D for many years and have yet to go through 100 lancets. :joy: Lifetime supply = one box! Hahahaha! They last for a lot of pokes.

I kinda want to frame that and hang it up. Because it’s super true. And moving on is really the key. @Eric once said to me “don’t worry, if it didn’t work this time EH can try again tomorrow. He’ll still have diabetes then too.” Which is actually reassuring.

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Every day will be full of surprises, it seems.

I’m really astonished by this.

Last night, despite that I tried to push Juno up a bit before he slept at 9.45pm, within about 45 minutes he was back down in the range of 108-120 and I watched this apprehensively until I couldn’t stay up any longer, probably at around 2.30am. He was in this range, with none of his usual elevations, for around 5hrs. I’m anticipating the coming low — based from his past readings — at 5am, thinking that because he’s now at 110, the low will be very low this time.

Usually I can go all night and not need sleep, but last night I was so exhausted I went to lay down next to Juno and wait for the Spike app alarms to trigger, hoping — between now and the arrival of the Bluetooth speaker I’ll use at night to amplify them — that I will hear them.

I wake at 6.15am and Juno is putting his clothes on. I go to look at his graph, and no lows. He’s 86 when I wake up

Basically, 8hrs within a range of 80-120.

I make him breakfast (two egg omelette in flat bread, plus Nutrifit muesli bar and banana milk and apple slices) and bolus 1 unit. The muesli bar always elevates him. It’s what I used yesterday when I was testing to discern his ratios. Alone, it adds 60 mg/dl over one hour.

Off to school, but even with all that food onboard, the 1 unit is pulling him down as he goes to class at a rate of -10 mg/dl from a reading of 89.

So, from a high of 160 to 89 within 30 minutes, all from 1 unit pre-bolused at 7am when he was 69.

He gets another muesli bar.

I start to wonder if we need to bolus Juno at all.

p.s., The low on this chart was purposive, as described in a post above.

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A very practical approach that saves a lot of mental wear-and-tear!

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You may absolutely have times where your son needs no bolus insulin because his pancreas still has enough production to cover your meals. We had a couple approx 4 day periods where we only used basal insulin, but then his immune system would get back to work, and in short order he needed bolus insulin again. It looks like you might be at one of those periods. With that said, we have lows like this almost every day, so you should probably start to think of those as normal.

In short, there is nothing in your quite normal looking graph that is concerning to me. We often have highs with much steeper down slopes that resolve themselves just fine with a few carbs. 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.

edit: made a mistake in the bolus basal insulin categorization, fixed the issue.

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Just a quick note to confirm what @Chris wrote. We have had exactly the same experience.

I remember the first time we hit a low, or a high of 200, after DKA. These felt worrisome at the time. But they quickly become par for the course.

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Thank you, Chris.

Following Eric’s instructions on Filling your own pens, I made a cartridge with Apidra and put into the HumaPen Luxura HD, so I can give 1/2 units.

You can see on the following the blue spot where Juno took half a unit before eating a fairly big bowl of pasta. And hour later, he had another bowl without any further bolus. I’m amazed by how flat his line is.

Started 108, down to 86 at the lowest point, and back up to 109 as I type this. A period of around 3.5hrs.

I don’t want to put strain on his pancreas, if anything remains of its function, but the ability to half dose is clearly better for him. At least right now, and that may change, as you say.

Cautious about curious about what will happen tonight.

p.s., the previous high was Juno at school eating 5 skittles and a juice instead of the two I asked him to.

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I know that this is frustrating, but be careful about scolding here. It is his body, and he will need to learn how to handle it, eventually he will take control and do the right thing, but right now he is in a period of mourning and adjustment. You have clearly done a fantastic job of learning how to control this disease, and that is amazing and an awesome testament to your learning ability. One of the less told truths is that the mental health aspects of this disease take a worrisome toll on many.

I remember vividly the week that my son had finished his initial learning, and about a month had passed, and he finally said the words that I was sort of dreading, “This is forever isn’t it dad?” This led to a 2+ month period of pretty severe depression and was only improved by his attendance at a diabetes camp where he got to meet his many T1 friends and find out he wasn’t alone.

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This exactly.

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.

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