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At the age of 9, Sam Mazaheri was diagnosed with type 1 diabetes. This means that Sam's body produces little or no insulin, a hormone that turns food into energy.
"Suddenly, I had to handle everything he was going to take, including insulin," said Sam's mother, Nasim Mazaheri.
It was scary, she said, and it was like bringing home a newborn baby.
"If I give him too much, it can kill him, or if I do not give him enough, it will eventually kill him."
Nasim and Ali Mazaheri, Sam's father, had not slept much, fearing the worst of scenarios.
Type 1 diabetes is a chronic disease that can be treated with medication. But without insulin, the body can no longer pass glucose from the blood into the cells and will eventually stop working. According to a 2017 report by the Centers for Disease Control and Prevention, more than 1 million people in the United States have been diagnosed with type 1 diabetes.
The Mazaheris, who live in Irvine, California, say that adapting to their new situation was difficult for the whole family.
Sam, now 14, started wearing an insulin pump attached to his stomach. The pump is a computerized device programmed to administer small doses of the hormone. He also had a separate blood glucose meter at the back of the arm that emitted a beep when his insulin level required intervention.
Sam had to learn how to count carbohydrates and pay close attention to his food intake so he could calculate how much insulin he needed at mealtime – a lot to handle for a 9 year old.
Sam and his father, Ali, have lunch together at home in Irvine, California.(Heidi of Marco / KHN)
In addition, Sam was attached to his parents. The first few months, they had to stay close to monitor his glucose levels and make the appropriate corrections.
"I was constantly watching him all night long," said Nasim.
Sam was sleeping well and did not hear the beep of low insulin alerts in the middle of the night. Worried, Nasim finally settled in Sam's room and fell asleep in bed with him.
Frustrated and fed up, Sam's father – who works at Microsoft – decided he could use his technology skills to make his son's life easier to manage.
Ali has discovered an online community of people who are also looking for ways to live better with diabetes. After scouring Twitter and forging links with other players in the tech industry, he came across what is called the "loop".
With free online instructions, DIYers – part of the so-called "open source community" – close the loop between an insulin pump and a continuous blood glucose meter. It creates a new system that connects the two separate devices, allowing them to talk to each other with the help of a transmitter and automatically deliver insulin to the body. They call it "looping".
Sam monitors his glucose level on his phone with the help of an open source code called open artificial pancreatic system (OpenAPS), known in the diabetic community as the "loop". (Heidi of Marco / KHN)
Sam uses a continuous blood glucose meter at the back of the arm.(Heidi of Marco / KHN)
The system sends commands based on frequent blood glucose measurements, adjusting Sam's insulin throughout the day.
Loopback only works on older model insulin pumps because the wireless technology is different from the newer pumps. Ali searched the Internet and found a few on Craigslist for about $ 600 each.
"There was a black market," he said.
Ali and Nasim can monitor Sam's blood sugar using their smartphones and smartwatches, wherever they are.
The first time he tried Sam, said Ali, there was still a sleepless night.
Ali, Acting Director of the Microsoft Technology Center in Irvine, Calif., Monitors the glucose levels of his Type 1 diabetic son on his smartwatch using a DIY loop system. DIY systems combine insulin pumps and continuous glucose monitors (CGM), with open source software that delivers different doses of insulin.(Heidi of Marco / KHN)
The closed-loop concept started with people frustrated by the fact that there were no more ready-made business options. And some people have gathered around the #WeAreNotWaiting hashtag to express their impatience for better health data innovations to manage their diabetes.
Lawyer in loop Dana Lewis, who lives near Seattle, said he knew about 1,500 people experimenting with the loop to control their diabetes.
In 2015, Lewis was one of the first to provide open source code to other people online. Now users are viewing their website, OpenAPS, for step-by-step instructions.
The Mazaheris have been looping for four years and Ali says they have no problem.
Nasim checks the blood sugar of his 14-year-old son, Sam, on his phone before going to tennis.(Heidi of Marco / KHN)
But in May, the Food and Drug Administration issued a warning.
"The use of unauthorized devices could result in inaccurate glucose readings or unsafe insulin dosage, which can result in injury requiring medical attention or death," he said. declared.
An FDA spokesman said the warning had been issued after the agency had received a report stating that a patient using an unauthorized device had suffered an overdose accidental insulin requiring medical attention.
Dr. Irl Hirsch, an endocrinologist, said many of his patients used loop systems to manage their diabetes.
"To date, patients in care and looping have been remarkably successful," said Hirsch, of the UW Medicine Diabetes Institute in Seattle.
But Hirsch has his own warning.
"I tell my patients who do this, it must be done at their own risk. There is no pump manufacturer to take care of them in case of problems, and I can not be held responsible for any problem, "he said.
The FDA also wants people to know that some of the recalled devices are exposed to cyber security risks. The FDA said there were no documented cases, but it was possible that someone else that a patient could change the settings of a wireless pump .
These warnings did not deter Ali Mazaheri, who said the loop allowed Sam to be independent and to be a child.
There is an FDA-approved medical device that closes the loop between an insulin pump and the blood glucose monitor, and similar devices under development. However, open source users say that they will continue to program their own devices, which gives them more flexibility to customize the management of their diabetes.
While he practices tennis, Sam carries around the waist a banana bag that contains his insulin pump, a cell phone and a credit card sized device that transmits the controls to the pump. .(Heidi of Marco / KHN)
Sam starts high school in September. He is an incredible tennis player and a passionate collector of Star Wars memorabilia. He also wears a SPIbelt belt around his waist, a banana bag containing his insulin pump, his phone and a credit card sized device that transmits commands to the pump.
"Now the pump will not work in the middle of the night," Sam said.
These days, her blood sugar is almost always in a healthy range.
This KHN story was first published on California Healthline, a service of the California Health Care Foundation.
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