WATERVILLE, Maine (NEWS CENTER) -- More than one million people in the U.S. have type 1 diabetes, a disease where patients don't produce insulin to manage blood sugars. Left unchecked it can lead to blindness, damage to vital organs and even death.
Diabetics have to monitor their blood sugars all day, every day. With no cure in sight, a group of parents tired of waiting for technology to better manage their children's diabetes are hacking into medical devices and creating systems that work with their smart phones.
It all started with a Facebook group of tech-savvy parents who took matters in their own hands, tinkering with medical devices to track their children's blood sugar levels remotely. Other patients also transformed their insulin pumps and monitors into 'artificial pancreas systems'.
Now families in Maine are using the software to build devices not approved by the FDA but they say keeping their children safe outweighs the risks.
Leo Koch was diagnosed with Type 1 diabetes when he was two years old. When he sleeps at night extremely high and low sugar levels could put him in a potential fatal diabetic coma.
'It's a very real fear at night time, when they're asleep because he wouldn't necessarily say I don't feel well, I feel sick and their blood sugar plummets and you wouldn't have any kind of warning," said Koch.
The 5th grader wears a continuous glucose monitor with a hair-thin sensor placed under his skin on his arm. It records precise readings every five minutes. He also wears a pump so he can inject insulin when he needs it. Desperate to keep better track of her son's unpredictable blood sugars Koch joined a Facebook group of parents called 'WeAreNotWaiting'.
'We are absolutely not waiting, we're done waiting. It's taken too long we know there is technology out there that makes his life better,' said Koch.
Dubbed "Nightscout', the parents designed a system that hacks into continuous glucose monitor and uploads the data to a cloud via smartphone or smartwatch connected to the device.
Hilary down loaded the free software and built a website that displays Leo's data. It also sends alerts if his sugars are too low or too high. Leo's phone and texts from his Mom remind him to take insulin or eat something. With Leo participating in a variety of sports his mother needed better way to control his blood sugar levels but there wasn't anything available approved by the FDA.
Following instructions shared online, which hacked an old insulin pump so it could automatically dose insulin in response to blood sugar levels, Koch built an 'artificial pancreas'. Also called a closed loop, she had to buy a special transmitter that allows Leo's glucose sensor and insulin pump to communicate with each other for the first time.
Dr. Mick Davidson is an endocrinologist at Wentworth Health Partners in Dover, New Hampshire. A specialty that treats diabetics. Diagnosed with Type 1 at a young age, he joined the do-it-yourself revolution to help manage his disease.
Dr. Davidson uses both Nightscout and the closed loop system which he controls with this app on his iphone.
Dr. Davidson says since using the device his blood sugar levels have become more stable. His finger stick blood sugars have gone from as much as 15 a day to less than four.
He feels the system helps patients better control their blood sugar especially while sleeping. Because the system is not FDA approved, he nor his practice can help a patient in building a system but.
'If someone is interested and willing to build it on their own and again trouble shoot it using the help of all the members of this huge online community, I have no hesitation recommending it," said Dr. Davidson.
Koch and other volunteers are helping families in Maine build Nightscout websites and closed loop systems. Ashley Thomas’s husband Ross and 5 year-old son Liam have Type 1 diabetes. Liam went online with his artificial pancreas a couple of months ago.