The First Teenager to Loop: Carson’s Story

9/24/19
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Every week on her podcast Diabetes Connections, Stacey Simms tackles issues and news relevant to the Type 1 community. In the newest episode, Stacey talks to Carson Wedding – the first teenager to start looping when she did so last fall. DIY-Loopers use an open-source app template called Loop for building an automated insulin delivery system. Loop can run on some versions of Medtronic pumps, and previous generation (Eros) Omnipod pods. The system works by connecting an insulin pump to a smartphone via a RileyLink device, and then uses data from a CGM to adjust insulin delivery rates.

Did it take you a while to figure out how to best loop for you?

Carson: There is definitely a learning curve because you have to be so much more precise when you’re using Loop… It also takes a while if you’re adjusting from going from Thanksgiving break to a full school schedule. That was also a bit different.

Stacey: So, you [looped] from Thanksgiving and as I recall your father posted publicly for the first time in February. Do you remember what happened when he posted it? Did anything happen to you?

Carson: I think he sent me a screenshot of the Facebook post and just said, “We’re live.” At that point I wasn’t on Facebook, so it didn’t really affect me.

Stacey: I guess what I’m getting at that’s kind of funny is in the diabetes world and in the diabetes online community, once your father posted this news it was absolutely amazing. And then once it was posted a few months later that other people could get this and the code was out there, and they could get the RileyLink and start looping with Omnipod, it was another momentous occasion.

But when you’re going through your day to day life as a high school kid, I can’t imagine anybody in school knew or said anything. Is it odd to kind of live in those two worlds, to know that you were such a pioneer in one and then in the other, it’s kind of like… just showing up for school?

Carson: A little bit. It doesn’t feel that odd to me because we’ve kind of been involved with Nightscout since the beginning when I was carrying around a Cabela’s tackle box in my backpack in elementary school. So, it didn’t feel that different to me and I also wasn’t involved in the Facebook group at that point, so I wasn’t getting what I’m sure was a barrage of notifications and comments and general freakout.

Were you nervous trying something so new?

Carson: A little bit, but not much. It seemed like the worst that could happen at any given point was it failed and we go back to using a PDM, or my blood sugar goes high and we correct it. It’s things that I was managing already, so the worst case scenario wasn’t that bad… I have much more control over my blood sugars and have to spend less time figuring out how to treat a low than I used to because I don’t have to be the one monitoring my blood sugar while I’m on the field – loop will do it for me. So, that’s one less thing for me to think about.

Stacey: It makes me smile to think about you talking about carrying the kit around with you in elementary school because I have known your family and the whole Nightscout evolution there… You are front and center on all this. Some kids really don’t like their diabetes to be a big part of who they are. It’s interesting to me that you not only seem to have come to terms with that, but have really embraced it. Any idea how you’ve done that?

Carson: I feel like I have just accepted the fact that diabetes is a part of my life, and so I might as well make the best of it and try to help others.

Stacey: What was it like going to Friends for Life? I mean, I’m sure people wanted to talk to you about your experience working the Nightscout booth. Anything stand out for you from that?

Carson: My favorite experience volunteering with Nightscout recently wasn’t at Friends for Life, but it was at a diabetes conference here in Denver. I remember there was a mom whose daughter had just been diagnosed five months ago who came up, and I was explaining it to her and at one point I just said, “I don’t think my dad has gotten up to treat a low in the past three weeks.” And she just started crying because she didn’t think that was possible anymore. I think that was a really big part in my involvement recently.

Stacey: It must be interesting though to know that it’s made that difference for your parents and not for you. I think that your mom and dad … I know as a mom myself, I’d almost not want my child to know everything I had to do for them, but your parents are really open with you, right? You’ve talked about this.

Carson: Yeah. I think my parents are more open about it than some parents are, especially when we had Nightscout. My parents were constantly communicating with me and they’re like “Hey, can you do a correction? Hey, go eat something.” And so, we got loop up and running. There was less talking about diabetes in the house, and just more talking about day to day life.

Stacey: That’s a great point. So, really there’s been less diabetes talk. Is that kind of a relief for you? Was it like you’d come home from school and your mom would say, “Did you check? Did you bolus? What’s going on with this?” And now it’s not there? Tell me a little bit more about that.

Carson: That’s pretty much exactly what happened. I remember elementary school getting in the car in the carpool line. She’s like, “Are you doing all right? How are your numbers?” And so, now when I get in the car on the way home from rehearsal she’s like, “Oh, how was rehearsal? How’s your day? How much homework do you have?” It’s a lot more normal.

Any advice for kids your age or families listening who are thinking about doing something like this?

Carson: Yes. I would say get involved as best as you can. Try and make friends within the community who have tried similar things that you’re looking into and ask questions before you try anything to see if it’s going to be the right thing for you.

Listen to the full podcast here:

 


For more information about looping, check out our Guide to DIY Looping.