Adventures in teen looping: expectations vs reality

November is diabetes awareness month. I blogged every day in November in past years. I don’t have it in me to do it this year but it’s a good reasons to at least write something here and there.

So, looping… For those who don’t know, looping is a DIY system created by a few genius T1 peeps and parents, that allows a small device called Riley Link to establish communication between insulin pump and CGM, so that it can automatically adjust basal insulin based on CGM trends. You gotta do a bit of work. I needed to do very basic coding, following amazingly detailed instructions, and built an app that loaded on V’s phone. Now instead of using her pump’s remote control she uses the phone app.

This is the set up with phone app and Riley link

I’ve waited for a long time for Loop to be compatible with Omnipod, so when it happened late spring we quickly jumped in.

Now, some loopers have amazing results. Their BG stays almost a flat line no matter what they do. But it takes a lot of work and dedication to dial in all the settings first. And it helps when people have predictive schedules and eating habits, and lean toward lower-carb diet. With a teen, we have chaotic schedule, higher carb diet, and stupid puberty hormones that constantly mess things up. Besides, teen’s cooperation to test settings is required. It’s easy enough to test overnight basal rates. But everything else that requires, during waking hours, either fasting and/or very careful and methodical consumption of exactly measured carbs to observe BG response to insulin, good luck!

Actual footage of my teen when I ask her to test settings

So, when we started looping I was aiming for two things: better and consistent control at night and decrease of burden. Improved A1C would be a bonus but not necessarily required, since it was already reasonable. I was not dreaming of straight lines. Good thing I wasn’t because we aren’t getting any! But we are getting the two primary goals accomplished.

Most nights are great. V stays and wakes up in reasonable range. Highs and lows still happen, but they are less frequent and less severe. We all are sleeping a lot better!

Last night’s graph. Started with a low that was caused by over-correcting earlier, but bounced back nicely and stayed in range all night.

V spends less time thinking about diabetes because Loop does a lot or work for her. When it predicts a low, it reduces or shuts off basal insulin, so it often results in “soft landing” in the 70’s or 60’s and then back to target range without needing to treat.

Loop has been suspending insulin for a while, so a bad low was avoided and BG recovered nicely by itself.

When V forgets to bolus (which happens more than I’d care to see), Loop tries to compensate with extra basal. What would easily be 400-500 BG without loop becomes 300’s.

Busted! Didn’t bolus till 1 hr after the meal. Loop working hard to compensate.

Still bad but much less bad and easier to get under control. Plus V loves using the phone instead of the clunky PDM.

And her A1C dropped 4 points without putting any more effort into Diabetes management. Sweet bonus.

So, no flat lines for us, especially during the day. But we are still better off with Loop than without it. And V’s endo is very supportive.

We’ll take it!

A Tale of Three Jersey Mike’s Restaurants

It was V who noticed a big sign on the window of one of the Jersey Mike’s restaurants: “Gluten-Free Bread Available.” Do you have Jersey Mike’s near you? They make yummy sandwiches. And let me tell you, it’s not common that a sandwich place will have gluten-free offerings. Naturally, we had to check it out.

We have a few locations near us. I was rather skeptical as V insisted we visit one of them. As we got in line, I noticed this sign!

Photo is a little blurry, but you are looking at very clear and detailed instructions on how to prepare a gluten-free sandwich in a way that would minimize chances of cross-contamination.

As we placed our order, our expectations were met and exceeded. Without us even asking, staff informed us that they would be preparing V’s sandwich in the back using fresh ingredients that were not part of the “buffet” set up at the counter. They had a couple of different sizes of bread available. They knew very well what ingredients were gluten-free and uncontaminated.

We had to wait a little bit longer for V’s sandwich but it was completely worth it. It was delicious. We went back to this location several times and had excellent experience every single time. Instant winner, shiny A+!

When sometime later we came to a different location, we assumed that we would have a similar experience. We proceeded with our order without asking any questions. Big mistake.

The staff started preparing V’s sandwich right at the counter. “Don’t you do it in the back, separately?” They looked puzzled by our question. “No, we change gloves and put a clean piece of paper on the counter.” Oh crap. They were rather clueless about cross-contamination. V was very hungry, so we decided to risk it but were watching them closely. On at least one occasion, the staff set the sandwich on the counter, then immediately realized it, picked it up right away and placed it on the paper. If my looks could kill he would have dropped dead on the spot. This was not safe. We really should have walked out, and if V had a history of getting sick after ingesting gluten, we would have walked out. I felt extremely uneasy and unhappy. I debated going back in and talking to staff but decided against it. It was not their fault that they did not receive proper training. Needless to say, we will not be returning to this place again. Instant looser, big fat F!

By the time we visited a third location, closest to our home, we adjusted our expectations. I scanned for a sign that we spotted at the first location about safe handling of GF orders. It was nowhere to be found. There was a different sign by the counter, a standard disclaimer that while GF ingredients are available, they may come in contact with gluten and that safety is not guaranteed. We asked the questions about ingredients, preparation and cross-contamination. First time ordering, staff seemed reasonably well-informed. They made V’s sandwich in the back; however not all ingredients were safe for her. Bacon was grilled on a shared grill. And they did not have uncontaminated avocados. On a second occasion, staff were less informed, though receptive to my requests. I had to ask them to prepare sandwich in the back. And when I noticed they used avocado out of a container at the counter that is used for all breads, spreading it with the same utensil, they had to start over with a different piece of bread. While I do appreciate that overall staff were more informed and accommodating here compared to the second restaurant, I think it’s completely worth it for us to drive just a little bit farther out to the first restaurant. This third restaurant gets a passable C+.

Three branches of the same chain, three very different experiences. And moral of the story is to never assume and to always ask questions before ordering. Sometimes it ain’t easy being gluten-free.

Sometimes we nail it…

…and sometimes we don’t.

Thanksgiving yesterday was ok diabetes-wise, but definitely not on the “nail it” category. V was low around lunchtime. She ended up over-correcting and/or over bolusing. And we were too busy to pay any attention to her BG in the afternoon. So when we were about to sit down for dinner, we realized that her BG was less than optimal, in the 200’s. We made the best guess in carbs and she bolused. She continued to go up past 300, then began trending down. When it was time for dessert we gave her a shot. And we over-did it. She was dropping, dropping, dropping. And so she had some juice and a bite of pie and we suspended her insulin delivery. And…you guessed it… we over-did it again. We were up a couple of times at night dealing with Dexcom alarms and administering corrections for high BG.

Oh well. T1D is a jerk and doesn’t care about holidays. On the upside, because she was having fun with friends, the glucocoaster didn’t seem to affect her much. And she ate everything she wanted. So FU T1D.

Thanksgiving glucocoaster ride

SWAG brag

SWAG is a very important Diabetes term of endearment. It means Scientific Wild Ass Guess and it is used when there is no carb info available and you have to make your best guess.

So, when you take your T1 kiddo for some ice cream that was her promised reward for an outstanding swim meet performance, but then you realize that her BG is not optimal for ice cream…

…you take her anyway because a promise is a promise. And then she orders a milk shake, which is OK because a promise is a promise. So you SWAG the carbs at 100 g. (!) And she needs to give herself a shot because it’s a shit load of insulin and there’s not enough in the pump at the moment. Besides, a shot is more effective because she’s high already.

She does the shot without complaining and enjoys the hell out of her shake. But you still second-guess yourself and wonder if you should have given even more insulin.

Then a couple of hours later you ask her to check BG and BAM 💥

NAILED IT!

It takes a village

Today, ok World Diabetes Day, I thought it would be fitting to talk about how many people help us make it work. I often hear stories of other PWDs and parents of T1 kids feeling alone. I am beyond grateful that from the moment V got diagnosed, we never felt alone or isolated.

When V was diagnosed and hospitalized, our friends and her friends came to visit and cheer her up.

Practicing doing shots at the hospital

Before she was even discharged, our amazing school nurse called us and helped us formulate a game plan. She was our strongest advocate and supporter as we learned to navigate how to manage T1D in school.

V’s teachers showed nothing but care and support and tried their best to accommodate her needs.

V’s friends are her cheerleaders and advocates. She is loved and accepted for who she is, with all of her dietary needs, medical supplies and robotic parts. They don’t flinch when she has to poke her fingers or do a shot. And their parents are also very supportive and accommodating. Many of them even welcome her for overnights, which includes helping her manage things at times, even at night.

Soon after V’s discharge I got a phone call from JDRF parent volunteer who checked in with me and connected us to a local network of T1D families. This gave us an opportunity to connect to others in real life and online. The group had been a tremendous source of support for our entire family. And V got to meet many other kids with T1D.

V and her diabestie!

Then we discovered DOC – Diabetes Online Community – where we learned so much more and met amazing people.

V’s endocrinologist rocks. Every single visit she takes time to address our questions and concerns without judgment and with lots of care and consideration.

We are so fortunate to have two local diabetes camps. V had been attending one or both every year since diagnosis.

Fun at diabetes camp!

Our family and friends have stood by us from day one. They may not understand all the intricacies of T1D management but they sincerely try. Many of them go out of their way to make sure V is always included and her needs are taken into consideration.

Love my tribe!

V’s swim coaches take great care of her. They remind her to test during practice, are calm and supportive is she has a bad hypo (like a 29!), and otherwise treat her no differently than any other teammate.

Living with T1D can be a lonely experience. We are so grateful for our village. Our hope is that as V is gets older she will continue to surround herself with supportive people. No one should go it alone.