The overwhelming response when I posted our first 6 days results on Control-IQ was “Why are you trying Control-IQ?” and “Does this mean you are giving up Loop?”
The second question is an easy answer: We have always been a family willing to try new things to see what works best for Anna. We haven’t always used Loop…we tried OpenAPS before as well for 6 months. Anna has used pods and Medtronic pumps. From pumps to CGMs to algorithms…we believe that trying new things is usually worth while. We don’t try everything (*cough* *cough* that 670G never tempted us…we like Dexcom’s CGM much better than Medtronic’s), but we do try to keep an open mind if something has a potential to lessen Anna’s diabetes burden. So are we giving up Loop? Not necessarily. If Control-IQ and the t:slim x2 pump don’t prove to be a better experience in Anna’s evaluation, she can easily go back to Loop use. We usually give things a full month before concluding anything about BG control of any system…but if the overall experience doesn’t work on an everyday-living basis before then, we would quit before a month.
The first question though is a little longer of a response and there are several layers to that onion 😉 Probably to start with, I need to go into a little bit of history.
CGM data provided lessons
When we first got a Dexcom, we were only one month into diabetes. The benefits were instant. Fewer finger sticks. Alarms to help me know when to check on her. Probably most significant to me was that it shortened our diabetes learning curve tremendously. We were able to see connections between our food choices and boluses like we would never have been able to see on finger sticks alone. I quickly learned how to make settings adjustments based on blood glucose trends.
The lessons from having CGM data access saved us years of effort in learning diabetes management.
Loop data saved relationship
About a year after getting a CGM, we started Loop. And you know what that added to our data stream? EVERYTHING. We now had automatic uploading of every carb entry and bolus. Every temp basal. We could log site changes more easily, I could see her cell phone’s battery level, and I could see the remaining units in her pump reservoir. It was every little bit of diabetes information.
At the time we started Looping, Anna was starting her freshman year of high school and was 14 years old. Before Loop, I would often text her during the day with instructions about how to treat BGs that were trending up or down. I would ask questions about “I see a rise, did you just eat? Did you prebolus? Or maybe your site is bad? We just changed it this morning.” When she was at school, I wasn’t sure whether or not she was doing things the same way as she was at home (which she was doing very well). I just felt such a burden to try to keep her BGs in range and not burden her with needing to make all those decisions. As a result, I interrupted her school day a lot, asking a lot of questions first so that I could make the best decision for the situation once I understood it.
When Loop brought us carbs, boluses, and temp basals…I didn’t need to ask all those questions anymore. Glorious!!! It literally healed a lot of relationship issues between us because I didn’t interrupt as much. Hands down that was my favorite part of Looping for a very long time. I could see that my kid was doing things fine, and it was a positive feedback loop that gave me comfort.
Loop allowed me to see my kid grow into her diabetes management like a true diabadass.
Around our second year of Loop use, Anna and I started seeing a therapist, Jenny, together. I just really wanted to make sure our relationship could survive the “teen years” and especially wanted help through the challenges of diabetes responsibilities. How long should I continue to make adjustments for her? Does Anna want to take the duties over? Was she capable of it? What level of “give” should I expect as she took over her own management?
We started the discussions, but admittedly we didn’t get far on some of the homework. But, the two most important take-aways from therapy for me were:
- Anna does not view my stepping back from such an interactive diabetes management as a “burden” thrust on her. Instead, she welcomed the shift. She WANTED to be more in charge and have me involved less. It wouldn’t be a burden, it would be a blessing. Those conversations were invaluable. I recommend every parent of a teen with t1d start those conversations. Find out if your kid will want to be sharing their health data, and if so…how/what data they are comfortable with sharing. I have a kid that doesn’t want to share unless she’s asking for help. And that is a decision I intend to respect. Closed looping certainly makes that an easier option because the health impacts don’t necessarily have to suffer as they take on more responsibilities. 🙂
- Setting up that transition is challenging. Teen brain is real. Parental overstep is real. Sitting on your hands and watching things NOT happen is hard when you are finally ready for her to start doing things. “Why isn’t she doing _______? Look at that data…she doesn’t see this?” was a frequent thought during these efforts to shift responsibilities to her.
So therapy helped us start down the path, but it would take a couple more lessons before I finally identified that the data that previously healed us, was instead now getting in our way.
Anna is growing up
I was having a hard time defining short- and medium-term changes we could implement for this transition of care. As a result, I just kind of ignored it for the most part. I tried simple things like making her take over the overnight low treatments when needed, as opposed to ME having the alarms in my room…we moved the LOUD alarms to her room to wake her up (she sleeps like the dead).
It was easier to see my long-term goal for how I fit in based on Anna’s discussions in therapy…I want to only be there as a fail-safe for low blood sugar alarms. Said another way, I want her to have healthy boundaries of privacy around how she chooses to manage her diabetes. But, I was not close to that long term goal. I see too much of the details of her diabetes management with all the data that Loop provides. I’m like a data addict. If it’s served up, I look. And if I look, it’s really, really hard not to judge or second-guess her actions. And by and large her actions are just fine…and I just need to chill. Really, I’ve had years of seeing her work and it’s really good. But the data just sucks me in to look at it regardless.
Two things happened to really help me change the long-term vision into more actionable medium and short term actions. The first change came as a result of living with adults with type 1. The second big change came from talking to two close parent-friends who had recently sent their t1D kiddos off to college (they are sophomores now).
What adults with t1D taught me: As part of my Tidepool work last year, I lived for a week with about 17 adults with type 1. I watched them so quickly estimate their carbs, give their boluses and then resume our conversations in the blink of an eye. I also realized that they had ZERO parents watching that entry. No mom on the other side looking that her son had just entered 65g and 8.5 units. And the adults had no desire for their parents to be seeing that kind of detail. They’d all grown up without CGMs and Loops, so it was never an option for their parents to be that involved. Yet for me, it was MY normal because of how quickly we’d started CGM and Looping. It’s this current generation’s normal now with Nightscout access and Loop data.
I asked them if any of them shared carb and bolus info with their parents or a significant other. They all said no, it was private. They did say that they had a couple trusted people that were trusted with access to CGM data. They shared that data with ground rules, like “don’t call me unless you see I’m under 55 for more than 15 minutes”.
Like a light-bulb, I realized just how good that will feel from a mental health perspective FOR MYSELF. To not know every time Anna eats and boluses. To just let a meal entry be a private thing she was doing for herself. Even if she is already doing that work herself now…there’s something about always SEEING those carbs and boluses that sucks me into a place that I ultimately am not comfortable having access to when she’s an adult. That should be part of her private personal “life habits” that she gets total control over. I won’t know that food minutia about my non-T1D daughter…so why would I have that info for Anna? If Anna wanted me to be a part of that data as an adult, we could do that…but we’ve already talked in therapy about how much she wants me pretty much as only a low-BG backup alarm.
Long-term, I know that I want to give adult Anna the same kind of privacy and non-judgmental space that I will provide to my other daughter (that does not have t1D). If I have access to her carbs and boluses info, I won’t be building that privacy. It will open the door to spaces that it should be private and only opened by her IF she wants to. So, I recognize that at some point…I will need to make sure I cut off that flow of information and only see blood sugars.
What the college kids’ parents taught me: Luckily, I have two great friends who have recently sent their kiddos off to college with t1D. They’ve been brutally honest about how difficult is has been. These are smart, good kids. These are smart, good parents. And yet, it’s just a tremendously hard adjustment.
One of the common themes between their two sets of advices has been to (1) prepare earlier than you expect for this transition, and (2) expect a decrease in time in range/increase in A1C. The advice is good. In fact, if you look at any clinical trials the late teens to early/mid-20s is statistically the time of life where the time in range is the lowest of any age range. The total insulin use per day is raging for that group compared to other ages. Hormones are starting to make things really difficult. College and social commitments make life more variable and diabetes is harder to balance.
The good news is that the statistics improve after this age. They recover. Their lives settle in. Their biology settles down. It all gets better. So that made me think that really my goals for the college years needed to flex a bit if our relationship were to come out unscathed. Above all, I want to make sure that we find a way to continue to have a great relationship through this incredibly difficult time coming up.
ACTIon items for change
So that brings me to why we are trying Control-IQ. The reasons are pretty straight-forward. I’ve covered a lot of the background about this move being part of the intentional transition of care. The t:slim x2 pump offers some things that Loop doesn’t do well for Anna.
- Multiple saved profiles. Loop lacks the ability to save multiple profiles and this has been a very difficult reprogramming of settings every Friday and Sunday nights to prepare for the differences between school and weekend needs. As well, we were having difficulties dealing with the insulin resistance that happens as the result of hormone cycles every month. Put simply, it was just too time consuming of a process for either of us to do so much. We both grew quite frustrated with that. The t:slim x2 lets us save 6 profiles and she can (and DOES) switch between them with just a couple buttons clicks. A huge problem has been alleviated by switching to t:slim x2.
- Simplicity of gear. Anna doesn’t have to carry a RileyLink anymore. She also doesn’t need to have a phone with her to get automated basal changes. While she didn’t have much of an issue with those things with Loop, I know that there were many times it was an issue…seemingly always happened at a time when you’d really want to be looping. Like she’d walk across campus to hang posters and be trending low…but she left her RileyLink behind in class because “it was only going to be for an hour”. Or at the beach, she would leave range of her phone/RL to go play smash ball…then no looping could go on. Plainly said, by not NEEDING extra gear, we’ve eliminated another potential failure point.
- Eliminating Red Loops. We have been lucky and not badly afflicted with red loops…but I’m not naive. I know they can happen suddenly and could require quite a bit of attention to resolve if not readily fixed with a reboot of phone/RileyLink. So eliminating this potential stress for Anna is probably a good idea as she moves out. I could easily see her choosing to ignore a red loop for a long time when she is on her own, and especially at night. Dorms are notorious for having a lot of wireless interference and overnights in dorms aren’t necessarily a “loop friendly” experience for some.
- Eliminating my need to follow Loop developments. The other nice thing about this is that I no longer would have to stay super current on bugs or issues in Loop. I don’t have to watch for bugs in displays or behaviors. There’s been a recent increase in bugs that I find particularly kind of confusing for kids since they are display related and kind of hard to identify if you aren’t spending a lot of time deeply understanding Loop.
- Eliminate worries about building Loop. Let’s face it…when Anna is in college, she will not be building her own Loop. She won’t be stopping to deal with Loop rebuilds if it needs to be done at an inconvenient time. Using the Tandem system eliminates the worry for both of us about iPhone/RileyLink failures or replacements. It also eliminates the worries that comes with every iOS update about whether it will cause an issue for Loop.
- Infusion site changes have built-in reminders. Oh lordy, site change reminders have been hard. I desperately want to not nag about them, so we set up really cool little IFTTT actions while Looping, so that if she pushes a button in an app, she would get a text 72 hours later to remind her that it was time to change the site again. But, if she doesn’t press that button…nothing reminds her to change a site except high blood sugars or site irritation. The t:slim x2 has a reminder built-in for every three days after each site change. It’s been working gloriously. Like night and day difference. This was one of the “parental nags” that I was really looking to eliminate prior to college. We needed a system that she could use to reliably keep track of site changes without a personal nag from me.
- Lack of data. This was one of the hardest things to put on the positives of trying Control-IQ, but one that I knew I needed. For Anna’s age and soon to be “grown and flown” to college, the data flow needs to pair down to just CGM data now as discussed above. I don’t want to be looking at her food. Quite simply, it is just not necessary and only tempts me to question what doesn’t need questioning. Ironically, this is the opposite of how I felt when she was 12-15 years old. That data then was very valuable for me to learn about diabetes and become comfortable with how she was managing herself. Now the utility of the data is gone. It is not serving to make her diabetes any easier, and is only a potential stress point in our relationship. I just need to be there as back-up for low blood sugar issues for safety. Of course, I expect Tandem will eventually have live data uploading to the cloud and it will be available again…but hopefully by then my cold-turkey efforts will have weaned me off of looking at it anymore.
- Bolus from phone still. While it’s not here yet (planned later this year), Tandem does have plans for releasing an app that will allow Anna to bolus from her iPhone (similar to how Loop works). I’m glad she will have that option, but she didn’t cite that in her reasons for liking Loop previously so I can’t really say that is a big influence one way or another for us. For other people, it may be a big deal.
- Algorithm differences. This one is going to be expanded on later, I’m sure. But for now I’ll summarize one part of Loop’s algorithm that I am most frustrated by…stuck on highs. Anna knew how to edit her carbs while she was stuck on a high BG or to add carbs…but this still seems a bit cumbersome for a kid. She find it easier to just give a small correction. With Loop, a small correction in those “stuck on high” situations will often result in Loop suspending basals and basically reversing the correction you applied. Control-IQ does not automatically drop you to low basals. Instead, since Control-IQ is looking at a 30-minute prediction (as opposed to a 6-hour prediction) for actions, you tend to get more “trust” from the system that your actions are reasonable for a time. Now I’ll undo a little bit of that and say that overall, we are experiencing far fewer times of being stuck on high.
- In-warranty pump. This hasn’t been a huge deal for me…but I do feel slightly better having an in-warranty pump that can be swapped out easily if it breaks. I feel better sending her to camp with a system that I’m sure the medical staff understands well. Again, not my biggest concern, but still was a factor in the decision as Anna goes to college.
- Rechargeable pump battery. I can just imagine college years that she will not have a AAA battery near her when she needs one at some point. The rechargeable battery on the t:slim x2 means that we have eliminated a likely failure point. She will be far more likely to be near or carrying a mini-usb charging cord than near a spare AAA battery these days in an emergency. I’m sure adults do a great job at placing AAA batteries around for themselves as needed…but college kids that could prove quite challenging.
So, in summary, that’s why we are trying Control-IQ. I believe it will help us transition into the next phase of her life better than we could do with Loop. I think there’s a bunch of us parents that are “growing up” with lots of data flowing from our kids constantly. I worry about how much that data is affecting their eventual privacy rights. I worry about how much that data is unknowingly able to negatively impact my relationship with Anna as she grows more independent and moves out of the house. She is at the age where her desired level of “control” is going to be driving the boat. Control-IQ allows her more autonomy and me to take a graceful step backwards. I won’t feel the need to make sure her or I are Loop current. We eliminate more diabetes conversations this way. She’s already shown me that those conversations aren’t needed nearly as often as I initiate them. If we can achieve a smaller diabetes footprint in our lives at very little/no detriment to time-in-range…why not give it a try?
So far…the results are super promising. Anna has reported the following negatives after a couple weeks on Control-IQ:
- The screen doesn’t auto-dim when you are in a dark room. It’s bright and kind of obvious in a movie theater or dark classroom.
- The pump clip sucks.
- The cartridge fill process is more clumsy than filling a Medtronic reservoir.
But, for the positives…she has NOTICED that we are talking less about diabetes. And that means the world. She is doing profile switching herself. She is doing all of it with less talking between us. That’s exactly what I was aiming for. Added benefit, she’s achieving better BG metrics than with Loop…but that wasn’t our aim to start with.
I challenge you all to start communicating and make sure that you are planning long term for your own kid’s transition. Find out if you are on the same page as them about data sharing. Start thinking about what you both need to do to get there. You hopefully have some time…but it goes by quicker than you’d imagine. I have spent a year trying to wrap my brain around this transition, identifying data addiction was part of the problem, and find a way to unhook myself from data addiction. I’m fine with just BGs…but I needed to rip the bandaid off and make it happen. Control-IQ is letting me do that plus addressing some things that Loop wasn’t doing well for us (especially that multiple profiles problem).
At one month or so…I’ll do a post showing the BG results comparison. We need to go through a full month before the comparison is very useful, but so far the results are showing that we aren’t doing any worse on Control-IQ. Standard deviation is down, average is only a tiny bit higher, % lows is cut in half, and time in range is improved. And, I’m learning a bit more about the algorithm to know which knobs do what. Will we switch full-time to Control-IQ? I don’t know…that’s up to Anna. I’ll support whichever she wants to do. If she wants to go back to Loop, I know I will disable Nightscout as my primary viewing/alarm platform and instead use Sugarmate app so that I’m limited to just BGs. As of now, I’m thinking she may want to stay on Control-IQ, but she needs to use it longer to know. This weekend she is going on an school-related overnight wilderness camping trip with Control-IQ and I think that will help her decide, too.