On August 29, 2016 after my daughter’s first week in high school, she asked to change her insulin pump. She no longer wanted to be on omnipod…she told me she wanted a tubed pump. Her reasons were simple; she wanted to show off a pump and she wanted to just be able to directly bolus from a pump (instead of pulling out her PDM bag and unzipping). I was thrilled because this opened the door at last to the DIY closed-looping community that I’d been reading about for awhile.
You can read about the history of the community in many places (I’ll add links to the bottom of this post later, in fact); but the short version is some really smart people got tired of data sitting unused and unaccessed. They all developed various parts and pieces (both software and hardware) to make it so that the CGM can talk to an insulin pump and make automated decisions about basal insulin delivery to help stay in target BG range.
Blood sugars going up? Insulin pump is told to delivery more insulin. Blood sugars going down? Insulin pump is told to deliver less insulin. That’s a grossly oversimplified version of the algorithm (math and decision tree) that is the heart of a closed-loop system, but that gives the rough idea.
So why did Anna need a tubed pump to make this happen? Well the commercial pump industry has software on each of their pumps that control how outside devices, like remote controls or remote meters, can communicate with the pump. It turns out that certain older model medtronic pumps have a software (aka firmware) that will allow the DIY community to access the commands of the pump. That communication portal has been shut down in newer versions and does not exist in other brands of pumps to-date. Therefore, it can’t be omnipod, animas, t-slim, or whatever other pump brand name or model you’ll ask about. It has to be a certain Medtronic model of pump and a certain range of firmware versions.
Now, originally I thought the only DIY closed loop system was one called OpenAPS. And my original impressions (in August 2016) was that the rig was clunky big and the setup was only for the type of people who were comfortable with linux commands (of which I am not). So while I was thrilled to have this option available, I didn’t think it was actually going to fly with Anna. She wasn’t going to want to carry a ton of gear. She wouldn’t have the ability to troubleshoot linux commands at school if the system went down.
I searched for awhile looking for options that might make the OpenAPS “rig” (gear pack) smaller. In searching Twitter, I found this photo of a boy starting school and his iPhone screen showed something I’d never seen before in all my #openaps searching. This kid was holding something that if I zoomed in looked like BG graphs on an iPhone.
— Ali Mazaheri (@AliMazaheri) August 24, 2016
Researching it further, I discovered the iPhone app he was using is called Loop. Loop is a DIY closed loop system, but it is not the same as OpenAPS. This opened up worlds to me. Loop had a small form factor (not a lot to carry) and could be on an iPhone (what kid wouldn’t want that? And it wasn’t linux, which bode well for my ability to get it built potentially).
You know those instances where the world of innovation just seem to take leaps and bounds all at the same time? Three days after the photo above was posted, Dana of OpenAPS tweeted a photo of the new smaller OpenAPS rig. It’s called an explorer board/edison rig. ACK…now I had some real useable choices that could be available for my teen t1d.
— Dana #hcsm #OpenAPS (@danamlewis) August 27, 2016
But, which one to choose? Well, the answer was simple enough. Building the Loop system was more immediately available. The smaller OpenAPS rig’s parts were still not in production and therefore not available. Plus…teen and iPhone. That’s a slam dunk.
If you know me from online at all, you know I threw myself into Loop (and finding that elusive old medtronic pump). Our RileyLink (communications part of the Loop system) arrived on September 21st and it took me about 2 hours to “build” our system. We closed the loop that night and never looked back.
— Katie DiSimone (@kdisimone) September 22, 2016
We’ve achieved amazing results on Loop. The sleep at night has been fantastic. The BG control unbelievable. The independence for the teen t1d is glorious. I spent less time texting her at school to tell her to adjust pump settings or give corrections. Loop was like sending along a diabetes babysitter with my kid all day. It just simply changed EVERYTHING.
— Katie DiSimone (@kdisimone) October 20, 2016
On October 29th, I went to Nightscout’s Hackathon in San Francisco. I just wanted to see the people who created the systems (Nightscout, pebble watch faces, Loop, OpenAPS) in person. I wanted to throw flower petals at their feet and thank them for the tireless work that they’ve done.
— Katie DiSimone (@kdisimone) October 29, 2016
I did all that, but also managed to walk away motivated to pay-it-forward however I could. Since I can’t hack, solder, code, or program…I decided that I would work to make the online documentation for Loop more robust. I threw myself into that effort over the next month(s). The result was a lot of wiki pages and screenshots, but I think it was well worth the time. I learned a WHOLE lot about the Loop system as a result, which definitely helped improve my Loop success.
— Katie DiSimone (@kdisimone) January 11, 2017
We would likely have never tried a different closed loop system, except for two things.
- Loop has some little quirks that people seemed to be struggling with, in particular with kids at school.
- I couldn’t find a good comparative review of OpenAPS vs Loop from a PARENT perspective.
Since I love trying new things, on January 18th, I ordered the necessary gear for building an OpenAPS rig and put on my big girl pants ready to slog through linux. The gear showed up on January 21st, two days earlier than expected. And here’s the super unexpected part….
Within a few hours of delivery, I had a fully functional OpenAPS rig going. It was “supposed” to be a lot harder than that. I’d heard it was really tough to build those rigs. And I don’t know linux. What happened? Turns out the instructions are quite good, just intimidating on the surface.
I had to pry the Loop app out of my kid’s hands. She didn’t go super willingly into this experiment. She doesn’t like changes to her diabetes management system. But, she agreed to let me try this out so that I could learn first-hand what the practical differences were between the two systems. ESPECIALLY from the perspective of a parent and t1d kid use scenario.
So now that leaves at the current day. We’ve been running OpenAPS rig for about 10 days and I have some good idea now of the differences between the systems. It’s time to get that comparison going.