This fall, 11-year-old Carson Wedding got to do something amazing: She went on her first field trip ― a day at Six Flags with the middle school band ― without the watchful eyes of her mom and dad.
Since being diagnosed three years ago of Type 1 diabetes, Carson’s parents have needed to stay close to help their daughter monitor her glucose levels and make the appropriate corrections: more water and rest if her blood sugar runs high, a juice or a snack if her blood sugar is low.
Carson’s dad, James Wedding, remembers the first few days after her diagnosis: “There were a bunch of tests and a bunch of drugs. You get dire warnings. ‘Be careful you don’t kill your kid. And good luck.’”
So mom and dad tagged along on field trips, and overnighters, and checked in multiple times daily with the school nurse. They also spent long afternoons at dance practice, helping Carson check her glucose levels during breaks.
An engineer by training, Wedding started looking for alternatives. “I work in technology,” he says. “So my first reaction is, ‘Where’s the download button? Why can’t I monitor this?’ I went from being shocked to being mad. I thought, ‘This is stupid. There’s got to be a better way.’”
Turns out there is a better way.
Wedding found Nightscout, a group of parents and people with Type 1 diabetes, using an open-source solution and the cloud to remotely and dynamically keep watch over glucose levels. They’ve figured out how to allow real-time access to glucose monitoring system Dexcom G4 CGM from Web browsers via smartphones, computers, tablets and the Pebble smartwatch running on Microsoft Azure.
This is how it works: A small sensor measures glucose levels just under the skin. The transmitter fastened on top of that sensor sends data wirelessly to the receiver that displays blood-sugar levels. To monitor from afar, a smartphone with Nightscout software downloads the data, transmits it to the cloud, then to your mobile device via a customized website.
The Weddings now monitor Carson’s glucose levels while she’s in school. They send a text to her Pebble watch if she needs to have a snack or take a rest. Carson says it was great to be able to go to Six Flags with her classmates – without her parents in tow. “It was nice to have that time with my friends. It was nice not to have to slow down, or have my parents nagging me about my blood sugar,” she says.
For Ali Mazaheri, that feeling of dread and fear of the unknown is still fresh. His son, Sam, was diagnosed with Type 1 diabetes this summer. He remembers sitting in the hospital with his laptop, trying to make sense of what to do next.
“To rely on a 9-year-old to poke his finger every four hours is pretty scary. As parents, we are wondering when we’ll get the call that his levels are low,” Mazaheri says. “At night, you can’t sleep. As a parent, you have this nightmare, you wonder what’s going on with him.”
Now, with Nightscout, he and his wife, school nurse and Sam’s teacher can monitor Sam’s levels while he’s at school as well as while he’s asleep.
Mazaheri, a technology architect at the Microsoft Technology Center in Irvine, California, got introduced to the Nightscout team by his friend Ed Raskin, whose son, Max, also has Type 1 diabetes. Mazaheri brought Nightscout’s grassroots effort to the attention of Chief Executive Officer Satya Nadella using company social network Yammer. Nadella was intrigued, and soon, with the help of Scott Guthrie, executive vice president of the Microsoft Cloud and Enterprise group, and others from the Azure team, Mazaheri was able to secure 1,500 Azure passes, each with a $500 monthly credit for six months, so families can use the system without breaking the bank.
The passes allow families to try Nightscout on Azure, free. Without them, they have to pay for access to the cloud, or fork over hefty data fees to their mobile service providers. “This is huge,” James Wedding says. “Ali stepping in and offering this bandwidth from Microsoft changes a huge part of the support system.”
Microsoft’s assistance “has made it easy for us to try this out on a grassroots level,” adds Ben West, one of the early developers of Nightscout software. “Someone can sign up for an Azure website and launch our code on it. It works great.”
West, 33, who also has Type 1 diabetes, says using the cloud to manage his blood-sugar levels has changed the “fidelity” of his day-to-day experience, as well as the communication with his friends and caregivers.
Managing his diabetes manually was also isolating, West explains “You have to pull out a meter, prick your finger. You’re doing something no one else is doing. But with Nightscout, watching your wrist is a natural action.” And with the cloud, others have the ability to also watch his levels. ”They can look at the same view of the problem that I’m looking at. It sounds trite, but it’s not insignificant,” he adds.
It’s estimated that more there are more than 3 million kids in the U.S. living the Type 1 diabetes, with roughly 30,000 new diagnoses of the disease every year. The majority of Nightscout members either have Type 1 diabetes or are parents of a child who does.
Amongst the growing Nightscout community, there are a lot of stories about freedom, West says: first time taking a walk with grandpa, first time away from home, first sleepover.
“I once hooked up this 11-year-old [on Nightscout]. The numbers flashed on the screen, and his eyes lit up because he realized immediately what this meant: No more ‘What’s your number?’ This becomes the dominant discussion in the household,” West says. “It contorts relationships between kids and parents. This is freedom from that.”
Carson is dancing as Clara, a lead role in the “The Nutcracker” ballet, at Taylor Dance Center outside of Dallas, Texas, this Christmas. She says having Nightscout means she can attend rehearsals on her own and correct her glucose levels as needed, in real time. It will also make performances smoother, too, she says. “Ten minutes before I go onstage I can see where my levels are at. I think it will be a lot easier for everyone.”
For James Wedding it’s about giving his daughter the ability to be an 11-year-old.
“If you come at this from a position of fear, you live in fear,” he says. “I don’t do this out of fear. I did this because I want my kid to be a kid.”
Check with your doctor to see if Nightscout is right for you. Don’t make any changes to your treatment plan without first consulting with your doctor.