Parent hackers spark do-it-yourself revolution in diabetes care for children
Meredith MacLeod, Special to CTVNews.ca
Published Tuesday, March 15, 2016 10:00PM EDT
Last Updated Wednesday, March 16, 2016 6:51AM EDT
Call it a do-it-yourself revolution in health care: parents desperate to keep tabs on their children’s Type 1 diabetes are hacking into blood sugar monitoring devices to watch them remotely.
Type 1 is a disease in which the pancreas doesn’t produce the insulin needed to manage blood sugars. High sugar levels left unchecked can lead to blindness, damage to kidneys, heart and nerves, and even early death.
Low blood sugar levels can trigger fainting and even seizures.
Continuous glucose monitors use a hair-thin sensor under the skin to record precise readings every five minutes. But when kids go to school, extracurricular events, camps or sleep-overs, parents don’t have access to those critical blood-sugar numbers.
So a new generation of tech-savvy citizen hackers is confronting parental anxiety by tinkering with those devices to allow for remote access to the information anytime and anywhere.
Dubbed Nightscout, volunteers have rewritten software code to upload data collected by blood sugar monitors to the cloud via a smartphone or smartwatch connected to the device. The numbers can then be accessed by parents through apps on phone, watches, tablets or computers.
Four-year-old Grant Schwartz wears a monitor on his arm all the time but when his parents are away from him, they have no idea what it’s saying.
His blood sugars are always unpredictable and diabetes is relentless, says his mother Marianne Schwartz. This technology allows his parents to always look out for him.
“The system has been amazing. We absolutely love it,” she said. “And I am ecstatic to share it with anyone I can because if someone else can access this tool, it gives them peace of mind.”
Kate Farnsworth was the first parent in Canada to set it up the system for her daughter Sydney, 12, after reading a parent’s blog from the United States.
Nightscout has been “life-changing,” she said.
“I used to worry all the time what her blood sugar was doing when she wasn’t with me or even when she is with me when she’s watching TV or just falling asleep in the back of the car.”
Farnsworth didn’t know if her daughter was falling asleep because she was tired or because her blood sugar was dangerously low.
She said her daughter often ignored warnings from her monitor because she didn’t want to stand out at school. So Farnsworth also worried about the long-term effects of high blood sugar on her daughter’s body.
All the worrying is gone because the system sends an alert if Sydney’s blood sugars are too low or too high. Sydney’s device and her mom’s texts remind her to inject her insulin or to eat something.
Sydney says she feels much safer with the technology at her side.
“I love it. It’s turned my life around.”
She no longer has to test her blood with a finger prick every hour. “I can go to sleepovers. I can snowboard. I can just be myself with the watch on.”
Parents say the watchful eye of Nightscout has allowed moms and dads to go on their first date since their child’s diagnosis or allowed a child to go to their first sleepover.
This global group of parents -- a Facebook group has close to 17,000 members -- weren’t going to wait for a commercial solution, says Kate Farnsworth.
All the parents involved donate their time and the software is given away for free. The only thing asked is that parents pay it forward by offering technical support or other help to families dealing with diabetes.
“Nobody’s in it for money,” said Farnsworth. “The only goal is improving the lives of the people around us.”