Alex's ilet Journey

05/05/2024

Haven't posted in a while because things are simply going along smoothly.

Alex switched to the Dexcom g7 last week with no difficulty. He made the comment that it's so small that he forgets its actually there.

11/27/2023

There is definitely something to be said for the type of insulin set you choose.

Alex prefers the steel set, which is an actual tiny needle cannula that stays in the skin. He's a muscular guy, so it just works better. And if it starts working it's way out or gets tugged out, he can just push it back into the skin.

The pump supplier didn't send him the right supplies this month, & he ended up with the Autoset-type, with a *plastic* cannula.

Today, he changed the site around 1 & by the time 3 pm rolled around, his bg was well over 400.

Ugh! I hate t1 so much!

11/10/2023

What it's like preparing for lows......
https://www.facebook.com/reel/1064611567855219?mibextid=9drbnH

09/23/2023

From Alex's mom:
A young type 1 in another online group I'm in is trying to get as many postcards as possible from all states (and around the world). If you're willing to send one to him, please message me for the details & address. We're trying to make him the one with the most postcards!
Thanks in advance!!

08/30/2023

Just got home from Alex's 3 month endo appointment at .
A1C 6.8 (It was 6.5 in late April.) He's had the iLet since July 10th - 6 weeks.

The doctor lowered his target so his A1C will likely get back down by the next time. (Lowering the target on the iLet means telling the device what his target bg should be, which will change its insulin dosage amount by enough to get his bg down to a lower number than it was initially told to get it to.)

Good visit overall. When we go to appointments, it's like we're visiting family. We did miss seeing Kate, our former NP. She's now the Beta Bionics rep who got Alex the iLet. (She was part of the team who brought the study to CHOA and got Alex in the study.) She staying very busy with all her travels and teaching folks about the iLet, though!

08/05/2023

We haven't posted in a little bit because there hasn't been a lot of "new" news. However, I think it's important to talk about last night because this sort of thing can happen - because nothing is perfect.

We ate out at a Chinese buffet last night....

If you've seen one of the last posts, you'll see that Alex is very much a healthy guy. He's extremely muscular, and he eats very healthy. He tracks calories, gets frequent body scans to ensure he is keeping in the BMI range he wants, works out and bikes, and rarely eats junk food. He would be that way even if he didn't have T1.

Last night he splurged. A lot. (We all did!)

With the iLet, you announce each meal (or snack) as "usual," "less than usual," or "more than usual." It only takes the pump a week or two to learn what those amounts are for you. Then, it knows how to dose you each time you notify it.

Unfortunately, there isn't a selection that reads "a whole lot more than usual." 🤣😳😬

The pump just took a "minute" (a little more than a minute!!) to keep up with Alex after that meal.

He went high, and all the while, that little engine (iLet) that could was pumping away dosing, but just not quickly enough to prevent that huge spike.

I can't remember the last time he had a spike like that. (I think it actually might have been when he was in the pump trial and happened to have a bent cannula so he wasn't getting any insulin.) This time, the iLet just gave the insulin it usually gave for "more than usual," and it wasn't enough.

Fortunately, the iLet is smart. It didn't just stop with what it thought it should give. It kept dosing - albeit slowly - until he came down.

The protocol for an extended high is the same as it is for any pump. He checked for ketones (none, as expected), and was **supposed** to have done a site change. ...But he was house sitting for a neighbor and opted to watch his bg a little longer. (According to his finger stick, he didn't really hit 400 like dexcom said he did--- it was more like 350.) Fortunately, it started to go down, and steadily moved back to a good number.

08/04/2023

A parent recently messaged me to ask a question. She said that her teenage son has a Tslim pump and the Dexcom. He often forgets to enter carbs for his meals which means his blood glucose goes high. Since the iLet is such a smart device, dosing insulin based on the blood glucose level reported by the Dexcom, she wondered if it would be a better option for him.
Yes, the Dexcom doses when the blood glucose goes up -- even if you forget to tell it you've eaten at all. It's such a smart device!
However, the goal of the iLet is for it to develop an algorithm which helps it understand how your body handles the carbs it takes in so that it can know how much insulin you need. If you occasionally forget to tell it you've eaten, it's ok: it will dose based off the rising number on the Dexcom. But the more you forget and require it to guess, the less it will learn and figure you out. You certainly don't want to cause it to have frequent setbacks toward creating the algorithm that will keep your blood sugar stable. The goal is to get as straight a line as possible on the Dexcom, and tighter control that keeps you in good range with your bg. So remembering to notify it of your meals is key!

Send a message to learn more

07/22/2023

Alex was 85% in range for the last week.
10% high (not completely sure of the high target, but it's possible that it's above 180)
5% lows.

I think that's pretty good!

07/19/2023

07/18/2023

This is a follow up to the last post.

If you forget to announce a meal, since the iLet is watching the Dexcom, it will still dose you as it notices your Dexcom number rise. That's the "smart" part of the iLet!

In the iLet manual, here's what it says about forgetting to announce a meal:

"You can announce a meal up to 30 minutes after you start eating. If you forget to meal announce, and more than 30 minutes have passed since you started eating, do not announce the meal.
CAUTION: After 30 minutes, your glucose is already rising, and the iLet has already dosed insulin according to your rising CGM levels, even without a meal announcement. If you announce a meal during this time, you will “stack” insulin and be at risk for severe hypoglycemia, as well as confuse the iLet, causing future meal doses to be less effective."

And this, my friends, is where the iLet shows out! ("What kind of sorcery is this?" LOL!)

Note: The entire manual is actually downloadable at the Beta Bionics website. (betabionics.com)

07/18/2023

Just now, Alex called me from his summer job to ask me to make sure he was doing something correctly with the pump.

They were eating lunch, and he accidentally told the pump that he was eating a "more than usual supper," when he meant to announce a "more than usual lunch."

Not wanting to mess up what the pump had already learned about his different meals, he canceled that entry. You can do that if you make a mistake with your entry by simply "dragging" the CANCEL slider to the left on the screen of the device. No panic needed.

His phone call to me was to check on whether or not he needed to do anything different than fixing his entry so it was the right meal. The pump had indicated it had already completed 27% of his original request.

So, in the moment it took for him to realize he'd put in the wrong information, he'd already gotten 27% of the required initial bolus of insulin for that (accidentally wrong meal) announcement. He corrected his entry.

Correction to earlier post: our BB rep told me that in the future, if that happens & insulin delivery begins, but you have to cancel it, DON'T re-enter the meal announcement. You should just let the iLet do its correction based on the dexcom reading.

07/18/2023

July 17, 23, day 2 of restart

The graph below shows lunch (1130) & supper (6 & 8) for today. Both were "usual" meals.

Usually, it takes a few days for the "less than usual" option for meals to be available on the pump because it has to learn what's usual before it can add the less than. Already Alex has the option of "less than usual!" That means the pump is already getting his algorithm together!