In Which All I Want for Christmas Is Diabetes Technology That Works Consistently

 It's almost Christmas, and my family is now at my parents' house in Michigan. It's nice to be back, after skipping last year due to Covid concerns. Of course, the pandemic is far from over, but at least everyone here has been vaccinated. However, I'm not going to subject you to a rant detailing my feelings about how this pandemic has been massively mismanaged, as much as I might like to. 

This year Kittygirl has take on more and more of her own diabetes management. Overall, she's done really well. We still handle nearly everything when we're with her, but she's in charge at school and when she's with friends, with support via text or phone from us when necessary. The only times things have gone really wrong have been when the technology has failed in some way.

Two Christmases ago I wrote that all I wanted for Christmas was a closed loop system. Kittygirl's doctor approved that about six months later. It's not perfect, but it really is helpful. We learned just how helpful this fall when Kittygirl's Dexcom sensor failed while she was at school. I told her to just check her blood sugar with her meter at lunch and we'd put on a new one after school. By the time school was out, her blood sugar was in the 300's. I'm still not sure what happened to drive it up, but if the system had been working her pump would have increased her insulin and it wouldn't have gone nearly so high.

If that was just an isolated incident it wouldn't seem so bad, but the fact is the sensors fail before the 10 day mark pretty regularly. The good news is the company has a nice replacement policy and will send you a brand new sensor if you report it. The bad news is we have to report it at least once a month. This means the pump doesn't get data from the sensor while the new one is warming up. Which isn't horrible if we can plan for it, but is super annoying if, say, the sensor has failed overnight and insulin dosing for breakfast doesn't work well.

Yesterday we experienced an example of what many people agree is the weak link in any closed loop system, the pump inset. That is, the little tiny part of the tubing that goes into the body and is replaced every three days. All the insulin the world won't bring down blood sugar if the inset fails. I don't know how it happened, but yesterday we noticed blood in the tubing when we changed the pump cartridge. We weren't due to change the site yet, and blood in the tubing has never happened before, so we just looked on it as a curiosity.

The sensor had been spotty all day, and we finally decided to stop it and put on a new one. At the time, the last point recorded was 208. Which is out of range, but not super, super high. We gave a correction with the pump and thought nothing of it. After a sensor is put on, there's a two hour warmup period during which there's not data. We sometimes check with a meter one hour in, but not always, and yesterday we didn't check. We regretted that when the first data point when the sensor came back was HIGH, which means over 400. On the meter, it was 447. We realized pretty quickly that it must be the site. We changed it, and Kittygirl's blood sugar came down overnight.

It wasn't the end of the world, but it was super annoying. There are systems being tested that will control insulin delivery without needing any input from the wearer. That sounds like a great idea and I'm sure it will be great most of the time, but it will still have the same problems the currently systems have. It will only be able to do its job when all of the components are doing their jobs, and those components fail way too often. I'm grateful that diabetes technology is constantly evolving and improving. It really does make the lives of diabetics easier.  What we really need is the next advance in biological treatment.

Just for fun, here's a picture of a gingerbread birdhouse that Kittygirl made with her aunt yesterday.

In Which I Finally Get My Christmas Wish and It's Not Quite What I Expected

It's been a long time since I posted here. So long there's been an update to blogger.com I didn't know about :). I'd been on a monthly posting trend, but now it's been nearly  two months. The handful of you who regularly check this blog had probably begun to wonder if I'd abandoned it altogether. The fact is, the original purpose of this blog was to get me back into a regular rhythm of writing, and it has accomplished its purpose. I spent most of the last two months working on a manuscript for a new middle grade novel that I've now started submitting to agents.

That said, I find I still have things to say about parenting and invisible disabilities, so I'm not giving this space up altogether. In fact, I have some thoughts that have been simmering for awhile now, so, if the kids let me, I may even go back to posting every day for a week or two while I wait to hear back from agents. 

Do you remember at Christmas when I  posted about wanting a closed loop insulin pump system for Kittygirl? Remember in February when I posted about our frustration that Kittygirls' endo was not giving out prescriptions for Control IQ and not giving a timeline for when that might happen? After that post they actually sent out a letter stating that they were not giving any prescriptions for Control IQ for patients under the age of 14 because it was not yet FDA approved. We figured we might have to wait until the system was FDA approved for younger kids, which, of course, was slowed down thanks to the pandemic.

Then the first week of May Kittygirl had an endo appointment via telehealth. Mr. Engineer thought the idea of a telehealth endo appointment in our case was incredibly stupid. The fact is, we make all of the diabetes decisions involving insulin rates and ratios ourselves, so we don't get any input on that at endo appointments. The only practical things the endo does for us is to measure Kittygirl's A1C and check her pump and CGM sites for scarring. Those two things can't be done in a virtual appointment.

However, we have to have a quarterly appointment to keep getting prescriptions for insulin and other diabetes supplies, so of course we proceeded with the appointment we thought would be total waste of time. It turns out it wasn't for one reason alone. Mr. Engineer mentioned that we'd really love to be able to get the Control IQ prescription soon so that we could get used to it over the summer  and make any needed adjustments so that it was running smoothly by the time school starts back up in August (presuming in person school starts in August, but that's a whole other post). The endo said that she'd check with the diabetes educators about the status of prescriptions for  kids and get back to us. She never got back to us personally. The next day, Mr. Engineer received an email from Tandem that the prescription for Control IQ had been received. It makes me wonder when we would have gotten it if we hadn't directly asked, since we were never contacted and the CDEs should have been well aware that we wanted it ASAP, but that doesn't really matter at this point.

You know the phrase garbage in garbage out? Well, it turns out that applies really well to hybrid closed loop systems. If you don't have your settings exactly right, a hybrid closed loop system is no better than a regular insulin pump. In fact, in some ways it's actually worse because the "smart" actions it tries to take can work against the things you've taught yourself to do to try to keep your/your child's blood sugar in range.

We had many of Kittygirl's settings optimized for Basal IQ, the prescursor to Control IQ, which shut off insulin delivery when blood sugar began to drop. We even changed the duration of insulin action time to 5 hours months ago to get used to it, since that's the unchangable insulin action time for Control IQ. However, we had done nothing to change Kittygirl's correction factor, even though we gave more insulin than the pump wanted us to give every.single.time we gave a correction and she rarely went low when we did so.

I had been telling Kittygirl for nearly a year that, once we got Control IQ, we could start experimenting with some new foods or new amounts of foods that I previously hadn't allowed her to have. So the very first morning Kittygirl asked if she could have three pieces of toast. I agreed, and it was a disaster of epic proportions. I think her blood sugar went up to 300, which, thankfully, is not common these days.

I was pretty frustrated and angry that Control IQ seemed to do absolutely nothing, and Mr. Engineer was pretty frustrated that I allowed the food change in the first place AND that I was frustrated with the system, because we had done nothing yet to change the settings to try to make the system work the best it could for us. 

It's slowly improving. I still don't think we have Kittygirl's correction ratio quite where it should be, and Control IQ still lets her blood sugar get higher than it would if it worked precisely as advertised, but it has definitely helped. When she eats rice or pasta for dinner, it used to be a huge fight to keep Kittygirl's blood sugar from coasting at 250 for hours. It's still hard to get her blood sugar back down at the level we want after a dinner of rice or pasta (particularly if dinner is eaten later than 6pm), but, thanks to Control IQ, it's more likely to coast closer to 180 or 200 than at 250, so that's a step in the right direction.

However, I do now let her have three pieces of toast on occasion, and I seem to have figured out a way to make it work. What I need to do is prebolus the carbs for two pieces, and then deliver the insulin for the third piece in a 50/50 split over two hours. It still doesn't work every time. Toast is a tricky food for Kittygirl, and I still sometimes find myself fighting a delayed spike from it 4-5 hours later (if you know the science behind this please comment, maybe it's the fat in the butter?), but so far today it has worked out well.

One of the best things about Control IQ is that the sleep mode keeps Kittygirl's blood sugar in range without me needing to do adjustments of any kind most nights. This is a huge. We'd gotten Basal IQ settings to the point that his happened probably 4 nights out of every 7, but with Control IQ it happens almost every night. It's great to not be regularly be awakened by alarms.

Speaking of alarms, however, the Control IQ alarms that can't be turned off really annoy me. There's one that sounds when it predicts that Kittygirl's blood sugar will drop below 80 in the next 15 minutes. First of all, we've learned over the past few weeks that, more than half the time, even if Kittygirl's blood sugar drops into the 60's, the suspension of basal insulin alone is sufficient for her blood sugar to rise back into the 80's or higher, so in those cases there is absolutely nothing we have to do. In the cases when she does need to eat something, the Dexcom alarm will notify us that her blood sugar is low. And, finally, about half the time by the time this alarm goes off Kittygirl's blood sugar is already below 80 and I'm looking at the pump like, "You're calling this a prediction?"

The alarm that goes off when Kittygirl's blood sugar goes over 200, telling us that this has happened despite and increase in insulin and we should check that there is no problem with the site or the tubing is also really annoying. Now, it may happen someday that Kittygirl's blood sugar is high because of a site or tubing issue, but so far it has always been directly traceable back to food, and I'm already well aware that the blood sugar is high and frustrated by it, so I don't really need an annoying alarm system to remind me.

Some people equate going from a regular pump to a hybrid closed loop system as like going from a manual shift car to an automatic, but I prefer the analogy of another diabetes blogger that Mr. Engineer read (I'd link to the post, but he doesn't remember where it was from). She likened it to going from a horse and buggy to a manual shift car. It's a big improvement, but it's still quite a bit of work. In contrast, having a working pancreas in this analogy might be like having a self driving car. It just does everything without any work on your part.

I'm glad I finally got my Christmas wish, but it hasn't been totally smooth sailing. That's the thing with diabetes. Unless and until scientists develop a treatment that allows the body to produce the necessary insulin to control blood sugar, it's always going to be a 24/7 job.

In Which I Love Diabetes Technology, Except When I Hate It

Diabetes treatment has advanced a lot in recent years. Back in the day, you had a little chemistry set in  your bathroom to measure the sugar in your urine (which is delayed by a few hours) and you took one insulin injection a day, of a dose that might stay the same for years at a time. Both insulin and blood sugar monitoring progressed to allow people to measure their own blood sugar at home using a small meter that would fit in a pocket and to be able to vary their diet a bit more with more injections of faster acting insulin.

A cure is what we all really want, of course, and, though there is some good research going on, in practice it's still pretty far out of reach. We actually weren't told this, but it seems people being diagnosed with type 1 diabetes have been told at least since the 1970's that a cure is 5-10 years away.
While we wait for a cure or at least radically improved treatment that doesn't involve regular insulin injection and blood sugar monitoring, we can be grateful for the amazing technology that's available.

Kittygirl wears a Tandem Tslim X2 insulin pump and a Dexcom continuous glucose monitor (CGM). For those who are unfamiliar with the technology, I'll explain how they work.

 The pump infuses insulin into her body through a site that is changed at home every three days. In her case, we use a site that leaves a tiny needle in her skin, which is attached to a long flexible tube that is attached to the insulin-filled cartridge in the pump. The pump is programmed with a "basal rate," which is a constant delivery of insulin at a certain rate and ratios to cover carbohydrates she eats and to lower high blood sugar. This particular pump has a fairly recent feature known as Basal IQ. Using CGM data, it cuts off her basal insulin when it predicts that her blood sugar will fall below 80 soon and/or when it is dropping at a very fast rate. Many people find this invaluable and rarely have lows because of it. In Kittygirl's case it is a useful tool, but her blood sugar tends to slide down to low very slowly and cutting off the insulin doesn't do enough so Basal IQ prevents a few lows and only mitigates the rest, making them easier to treat. In the picture below, the red areas on the pump show when insulin was cut off.

Her Dexcom CGM consists in a sensor she wears on her arm that is changed every ten days. A tiny wire goes under her skin and there are chemicals on it that react to the glucose level in her interstitial fluid and transmits the data to both a phone and her pump every ten minutes. Her phone transmits the data to the cloud, where Mr. Engineer and I can receive it through an app on our phones. A pic of the sensor and her phone are below.

These are both amazing tools and I'm incredibly grateful for them. Being able to see Kittygirl's blood sugar at any time even when we're away from her has allowed us to do two things with confidence. First of all, it has allowed us to understand in a way you simply can't even with hourly blood sugar measurements with a meter the way food, activity, and insulin affect her body. This has allowed us to make adjustments to her food an insulin doses with confidence, which has allowed us to keep her blood sugar in range much more often than average (though still not as often as we want to), allowing for an A1C that consistently impresses her doctor and gives her the best chance at good long term healthy.

Secondly, it has allowed us to send Kittygirl to birthday parties, on playdates, and to other places where the adults in charge have little, if any, training in diabetes care. If there is food involved, I simply ask the adult to text me a  picture so that I can give a carb count. When Kittygirl was younger, I gave a quick tutorial in using the pump, but now Kittygirl does that herself with an adult looking on. I can also see on my phone if Kittygirl's blood sugar is running low and text the adult in charge to give her some food before it gets too low.

So why do I sometimes hate this awesome technology? The first reason is because I feel kind of bad for her because she has to wear it all the time. Diabetes is an invisible disability, but diabetes technology can be very visible, and sometimes that bothers Kittygirl. In the summer kids at the park or the pool and constantly asking her what's on her arm, and she really doesn't feel like telling them. If I get the pump out to give her insulin for  a snack in front of strangers, they always want to know what I'm doing. It gets tiresome. 

In the interest of full disclosure, I should note that Kittygirl could technically wear the sensors on a less visible part of her body. In fact, the only FDA approved areas are the stomach and the lower back. However, Kittygirl is so lean that the sensors have a hard time accessing enough interstitial fluid to get good readings. 

Also, I feel kind of bad when Kittygirl points out that she's almost never truly naked because she always has a pump site and a sensor. This doesn't truly bother her. She just points it out as an interesting fact. However, it makes me a little sad that she needs to wear these devices to live the most normal life possible.

These concerns are outweighed by the benefits that the technology gives both to her and to me and Mr. Engineer as her parents, but I wish we could live life without thinking about blood sugar and insulin doses.

The other reason I sometimes hate diabetes technology is all about me. I have a tendency to let it take over my life. This is particularly true for the Dexcom. I have a bad habit of obsessively checking the Dexcom follow app on my phone, even when a huge change is unlikely. For years, I had the alarms on my phone set such that they went off as soon as Kittygirl's blood sugar was out of range. This was unnecessary when she was with me because her alarm would go off and we'd get alarms in stereo. When she wasn't with me, for instance when she was at school, the alarms were useless because I wasn't the one in charge of dealing with them.

This all led me to be seriously stressed out over Kittygirl's blood sugar. In fact, I even damaged a phone in my frustration over her blood sugar. Squirrlboy and I were in the living room doing homeschool work (it was history, in case you care) and Kittygirl's low alarm kept going off. I knew that she was taking a test that morning, and it frustrated me to no end to think that she and her teachers had to keep getting interrupted and that she probably wasn't performing at her best level. Then Squirrelboy made some kind of wisecrack and it pushed me over the edge. I threw my phone across the room. Though it was in a case and landed on carpet, I still managed to shatter the screen.

After that I determined to be less crazy about Kittygirl's blood sugar and I even sometimes turned off the alarms when Mr. Engineer was fully in charge because they were on an outing together or I was away for the evening. I still kept them on most of the time until about six weeks ago, however.

At that point Mr. Engineer (who, you might have noticed, gives pretty good advice) told me he was really tired of me freaking out over Kittygirl's blood sugar all the time and also tired of hearing alarms in stereo and I had to do something to solve the problem. I experimented with lengthening the amount of time Kittygirl's blood sugar had to be low or high before my alarm went off. It was surprisingly freeing. I lengthened it even more. I still get alarms when Kittygirl's blood sugar is out of range for more than an hour on the low side or two hours on the high side, but I'm not obsessing over it anymore and it's amazing. Sometimes I actually go a whole school day without checking my Dexcom app.

Diabetes technology offers a lot of benefits. I wish it were available to everyone. It can offer a child with diabetes freedom that's harder to come by when their blood sugar has to be checked with a meter regularly and they need to receive injections of insulin many times a day. However, caregivers of type 1 diabetics need to check themselves to make sure they're not letting the technology take over their lives.