Looping with Type 1 Diabetes
Warning, this is going to be a very long post.
First off, if you’re wondering, what on earth is Looping? Here is the 411: It’s a DIY hack to turning your pump and phone into a smart pump aka closed loop. It is an app you have to build (don’t worry, way easier than it sounds) and carry around a small device called a Riley Link that allows your phone to control your pump with an amazing algorithm.
The little white box between the Lego Block and Quarter is the RileyLink
This May, I will have been Looping with T1 Diabetes for a year. I was introduced to the Loop community at a Children With Diabetes (CWD) conference, and have never looked back. With T1D x 3 in our household, I desperately needed a way to manage all our blood sugars while also keeping my sanity. A few months before I started Looping, we got my husband the 670G system (insurance wasn't ready for me to upgrade yet but his pump was older). After CWD I decided to try Looping because I needed to focus all my energy on managing my daughter’s Type 1 Diabetes and I had noticed that my good days always correlated with her bad ones and vice versa. I chose her, obviously. Looping made it so that my Type 1 Diabetes took up a lot less headspace and brainpower for me, while also bringing my a1C down to an amazing 5.8. It gave me the ability to take care of my daughter the way I needed to.
All that being said, Looping isn’t easy. It isn’t a cure. It takes dedication and time and patience. Also, it isn’t FDA approved and it took a while for me to trust the system and the community. Building the app is probably the easiest part about it, and this is coming from someone who isn’t the most tech savvy person out there. I have very very basic coding experience (I know how to make text bold or italic in html and that’s about it). Most of my website building experience is on Squarespace or Wordpress templates. I have a bit of imposter syndrome even writing this blog post, because I’m not as well versed in everything Loop related and I am often asking questions in the Loop Facebook group. But I wanted to write this for the other people like me out there. The people who aren’t engineers or math geeks that understand the tech lingo, or just somehow look at graphs and know that it means your ISF is off. That’s not me, and I’m still Looping.
Pro’s of Looping
My absolute favorite part of Looping: night times. I don’t go low at night. Simple as that. Even with my settings not being perfectly dialed in, I wake up in target range and have a pretty flat curve. If I didn’t have two really young children, I’d be sleeping like a baby thanks to Loop. Being in range while I’m sleeping (aka the attempted 7 hours barring children) is why my a1c came down.
I love the DIY, #wearenotwaiting, Loop community. It is a group of people that are super smart and insanely generous with their time and energy and effort. I have had people living half way across the world hold my hand through running auto-tune for the first time, and I am insanely grateful to the patience I have been shown.
Being able to bolus from my phone and watch. I don’t have to touch my pump outside of site or battery changes or taking it off to take a shower.
THE GRAPH. Omg I love the predictive graph. It helps me treat my lows more accurately, and less prone to rage blousing. It has given me a better understanding of how my insulin actually works and how important it is to understand Duration of Insulin Activity (DIA). It has also helped me actually visualize the impact of different foods on my body.
I get to decide what my target range is.
The pre-meal button on the Loop app has saved me so many times, especially in the mornings. I have little kids who usually want to eat whatever I was about to, so pre-bolusing doesn’t work as well as it could. The little pre-meal button basically sets your target BS to be lower so that by the time you start eating, you are floating at 70 or whatever you set your pre-meal target at so you can bolus as soon as you start eating instead of having it all figured out 15-20 minutes beforehand.
Exercising with Loop. Pre-loop, I’d either have to leave spin class towards the end, not give it my all, or run higher than I’d like. With Loop, I use the workout button (higher target range with a higher ISF while working out) when I start, then halfway through spin class I switch over to the pre-meal button because I know the adrenaline has started to kick in. I also have to eat a mini perfect bar or Mammoth Bar without bolusing for it. You will still need to figure out what settings and temp targets etc. work for you depending on your exercise of choice because all of the above does not work when I go running.
Cons of Looping
Sometimes the RileyLink just doesn’t work. For some reason I always get a red loop (meaning Loop isn’t working because of technology failure ranging from the bluetooth connectivity, to your sensor data not coming through, or the RileyLink being off or their being data interference at a large conference setting) when we’re at a Barnes and Noble. Weirdest thing, I know. There have been enough times that I have had to carry out all the troubleshooting tips to get the RileyLink to connect again (turn the Bluetooth on and off on phone, toggle the Rileylink switch on and off, etc.) that make me a tiny bit nervous for when it comes time for me to get Aiyla to Loop with the Omnipod and she’s not with me.
I don’t love having to carry another little thing (the Rileylink) around with me in this age of our Diabetes Management tools becoming more discreet and sleek.
I don’t like that I have to use an out of warranty pump that might die on me (the first old pump I used to Loop did die on me after sweating too much in spin class). If I didn’t have 2 loopable pumps and a backup, it wouldn’t have worked out for me. Hopefully that won’t be an issue for too much longer with Omniloop and and Tidepool Loop on the horizon.
It uses up a little more battery life since your basal’s are being adjusted relatively often so be ready to stock up on more AAA batteries. The first few weeks of looping when my settings were pretty off, I ran through a ridiculous number of batteries. As my settings have gotten more dialed in and my basal’s are more accurate, that has settled down a lot but I still have to change my battery more than before. Not a big deal, just a PSA to buy a Costco pack of Energizer AAA batteries.
The pro’s definitely outweighs the con’s in my opinion.
Getting Started
Read everything in the LoopTips and LoopsDocs. Loop is an app that automates insulin delivery, so you should make sure you understand how it works and how to use it.
Join the Facebook group. Creep around, read the posts, fall in love with the people. If you have any questions, first search the group to see if someone has asked the question and come up with an answer already.
You should test your basals, ISF, and Carb Ratio’s before you start to Close Loop. Check out this post on basal testing and Katie’s DiSimone’s post all about your initial settings. If you don’t have them all figured out, your graphs will not be as pretty as some of the ones you see posted on the Facebook group. You will still get tremendous value, and begin to understand how those different settings impact you as you play around with them. But you will be so much happier if you have those figured out beforehand, regardless of whether you decide to Loop or not.
Start out in Open Loop. Open Loop is just a button you toggle on the Loop app that allows the app do give you suggested basal changes and suggested bolus amounts based on the information it has. It will not make any changes on it’s own. It gives you a chance to understand how the algorithm works and feel comfortable with it’s accuracy (and also to fine tune your settings).
Cost: Depends. If you already have a loopable pump, or are waiting for the Eros Omnipod Loop code to get set up, the only cost outside of your usual Diabetes Management is the RileyLink which costs $150. If you are starting from scratch, are only using meter’s and MDI right now, the cost breakdown varies depending on your insurance. But there is the cost of a loopable pump, the CGM (Dexcom or Libre which involves extra setup that I am not familiar with), the supplies associated with both, and the RileyLink. It’s always a good idea to have a backup RileyLink too, because once you start Looping it is really hard to go back.
Reach out to someone if you want to learn more. Everyone in the Loop community is amazing (see my note about them above) and more than willing to help you understand better. At the same time, if you haven’t done your research, read through the docs, searched what you can in the Facebook group, it isn’t quite fair to ask someone to just tell you all of that stuff in a one hour sit-down. If you don’t understand all of the lingo and genuinely need help, help is here. I get it, I still get baffled by some of the terminology being used there sometimes. Just try and do all that stuff first so that people can help you better.
Check out this article and podcast interview of one of Kate Farnsworth, one of the people helping run the Loop facebook group: https://www.bloomberg.com/news/features/2018-08-08/the-250-biohack-that-s-revolutionizing-life-with-diabetes
FAQ’s:
Yes, you always need to have your phone on and near you. This isn’t a set it and forget it system. For Loop to be running, you need your pump, RileyLink and phone close to you and able to communicate at all times. For those of us who are already wearing a Dexcom sensor, nothing has to change aside from adding the RileyLink to the mix. But for anyone switching from the 670G or someone who hasn't been using a sensor, it takes some adjustment remembering to have your phone nearby. So no, you can’t turn your phone off and charge it another room at night.
The RileyLink needs to be pretty close to the pump to have the highest chance of reliability in its ability to communicate between pump and phone. For mom’s of littles, this will most likely mean your kid wearing a fanny pack, spi-belt, or crossbody of some sort. I will link to some suggestions I have received from the other wonderful parents of little’s that are Looping in the resources section of this website.
Loop is not ready for Omnipod yet. The RileyLink specific to Omnipod is available for purchase, but the code to build the app is not ready yet. The amazing DIY community is working on it, but we’re not there yet.
Will it be easy to use for school administrators? Katie DiSimone created this absolutely wonderful printable document specifically for school nurses. It’s a pretty great resource for any part time caregivers and also for those of you just learning about Loop too. The other consideration for all parents to keep in mind is the power of Open Looping (read above). You can always use Open Loop during the day when your kid is in school, and go back to Closed Loop when they are back home with you if it makes you and the school more comfortable. Open Loop will essentially keep whatever your preset basals are running as usual, and only give you suggestions that will manually need to be accepted (pressing a button on the app) if you were to accept them. That being said, Closed Loop will make things easier for the school since you won’t ever need to ask them to run a temp basal for you, and it will suspend insulin in the case of a pending low.
The question I have been asked multiple times: Is Looping good for kids/tweens/teens? That depends on so many variables. My daughter is not Looping yet, but that is because I am not comfortable with her being on a tubed pump at her age. I was not ready to have her tethered to a fanny pack or spibelt at 2 years old and wanted her to have as untethered a life as possible. However, I have the Omnipod RileyLink ready so that as soon as the code is available, I will be testing Loop on her asap. The only concern I have about her looping on the Omnipod is the risk of more pod failures because the pod is being communicated with far more often than they are designed to be. That means, more site changes and more likelihood of having to go to school to change her pod. The other variables to consider are your patience. It takes some time to learn the system and get comfortable with how it works. You need to be ok with the fact that there is no 24/7 tech support phone number that you can call. You also need to be willing to learn how to troubleshoot errors, search the Facebook group for questions that have already been asked, search through the documentation before asking for someone to help you (unless you have a good friend that is willing to help you). That being said, having experience with a few different options for managing T1D, despite being able to upgrade my pump now, I can’t go back from Looping and can’t wait to get Aiyla on it. I think most teens and tweens will love the ability to bolus from their phone and watch and everyone will love all the different pro’s I listed above.
There are a few different DIY systems out there, and I want to clarify that I am specifically referring to Loop. Click here to read about other DIY options that I haven’t figured out or used myself.
If you have anymore questions about Looping, feel free to shoot me an email at type1basics@gmail.com or send me a DM over on Instagram. I hope this was helpful!