Parents fight diabetes diagnoses with diligence and technology

No matter what the odds or the doctors or the search engines might tell you, a parent’s thoughts will always linger on the worst-case scenario. And for the mother of a 2-year-old with Type 1 Diabetes, that scenario plays out in your mind every time you lay down to sleep. 

“I worry every night when I go to bed that her blood sugar will go too low and she won’t wake up,” said Maureen Lathan-Thompson, whose daughter Gracelyn was diagnosed with the disease last summer.

More than 20 factors can affect blood sugar levels. Spikes can sometimes occur seemingly without warning, and many parents of young children with diabetes wake up several times a night to check on their children’s levels.

But thanks to a recently-approved technology that has some of its roots in the Rochester area, Thompson now has an extra layer of her protection for her daughter. The MiniMed Connect device monitors Gracelyn’s glucose 24 hours a day, sending alerts to Thompson’s smartphone if Gracelyn’s blood sugar drops too low.

“It’s really the most high-tech thing out there,” said Jean Mack-Fogg, P.N.P., who along with David Weber, M.D., provides care for Gracelyn at Golisano Children’s Hospital. “And the device uploads the data every evening, and then I can see it right here on my computer.”

Thompson still worries, of course. Little could change that. But as long as she’s got her phone with her, she knows she’ll have a backup – as well as a litany of other data that’s being regularly collected by the device.

 “It’s huge, huge, huge,” said Thompson. “And it sends all the pump data through to my phone as well. When we were in the emergency room a short while ago, people were saying ‘Show me the data from your phone,’ because it was so live and up to date.”

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It wasn’t always this easy, of course. Four years ago, John Costik was battling the same problems that the Thompsons had encountered shortly after Gracelyn’s diagnosis.

Costik’s then-4-year-old son, Evan, had been diagnosed with Type 1 Diabetes. Working with Henry Artman, M.D., and Elizabeth Vaczy, N.P., at Golisano Children’s Hospital, Evan began using a system that inserts a sensor just beneath his skin that continuously monitored his glucose levels. But his father was frustrated that he couldn’t check on these levels when they were apart.

“The first day I dropped him off at daycare, I realized I still wanted that data,” said Costik, a Livonia resident. “I’m a software engineer, and I figured that there must be some way that the device talks to the computer. So that night, I built a system and we sent him to daycare the next day with a laptop, and the information went from there to a Google spreadsheet that I could check from anywhere.”

Costik soon figured out a way to get the data uploaded by a smartphone and displayed on his Pebble watch, and he shared his solution on Twitter. Other engineers noticed, and several of them joined with Costik to combine their various monitoring products. They made the project open source, meaning anyone could download and use it for free, and soon, the “NightScout” was helping thousands of parents across the world monitor their children’s glucose levels from anywhere.

The Food and Drug Administration took notice, and asked for a meeting.

“NightScout showed them that there was a demand for this type of product – that even parents who weren’t that technologically inclined were willing to jump through these hoops to set it up for their kids,” said Costik. “So if they didn’t approve the technology, people were just going to do it anyway.”

Just a few short weeks after the meeting, the FDA reclassified continuous glucose monitoring products so they didn’t need to go through the rigorous testing and approval process that they’d previously required. Manufacturers quickly responded, and devices that worked similarly to NightScout began to hit the market. 

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Both Costik and Mack-Fogg believe that new devices, such as Gracelyn’s Minimed Connect, would not have been fast-tracked by the FDA if not for the popularity of NightScout. And now, families everywhere are seeing the benefit.

As long as she’s being monitored, Gracelyn’s care providers say there’s no restriction on what she can do. And the 2-year-old takes full advantage, following her older siblings on to the ice skating rink for practice, and starring alongside them in recitals.

There’s still a lot that her parents need to pay attention to. Thompson inspects her daughter’s plate after every meal to estimate – as closely as possible – how many carbohydrates she’s taken in. When her blood sugar levels go too high or too low, she’ll alter her insulin doses accordingly. Adjustments have to be made constantly, but in time, Gracelyn will learn to keep track of such things herself.

“She’s starting to get it a little bit,” said Thompson. “A couple times she said something hurt. So she’s been able to speak about it more recently, and that’s going to be very helpful.”

For now, Gracelyn is enjoying being a 2-year-old, and she’s improved by leaps and bounds since the time before her diagnosis, when her mother was worried that she was falling behind.

“When this first started, I thought she was a fourth child who just didn’t have a lot of speech,” said Thompson. “But now, she speaks in paragraphs. After she was diagnosed and started to get the insulin, it changed everything about her.”