Our smartwatches are fun. Our smartwatches are cool. Our smartwatches could save a life.
Yes. Now a special kind of smartwatch can send a text message, place a phone call, as well as make a record of every time someone with epilepsy has a seizure. Earlier this year, the Food and Drug Administration approved Embrace, a smartwatch that does just that.
Austinite Elaina Cione, 15, has been wearing an Embrace since February. She was first diagnosed with epilepsy when she was 8 and began having seizures. With medication she went about two years without a detectable seizure, but that ended about a year ago.
For her parents Todd and Elizabeth Cione, the fear is that Elaina will have a seizure in her sleep and her airway will be blocked by a pillow or the mattress, or that she will have a seizure and hit her head without anyone knowing it. One time they went upstairs, woke her up for the day, gave her medicine, went back downstairs and within minutes they heard her collapse on the shower floor. Epileptics also die of something called sudden unexpected death in epilepsy, which is similar to sudden infant death syndrome. They are just found dead in bed.
There’s no warning with a seizure and Elaina doesn’t know what’s going on. She has no memory of them and loses track of time. “It’s a terrible experience to see a loved one have a seizure,” Todd Cione says.
Since Elaina began wearing the Embrace, some of that fear has subsided. Easter weekend, Elaina was in another room of their house when the Todd Cione’s phone rang and alerted him that she was having a seizure. She ended up having nine more in a 12-hour period. “Had I not been alerted, with five of those seizures in night hours, I may have never known about it,” Todd Cione says.
On the first seizure, he found her, in bed with the covers pulled up around her. “It was a little alarming,” he says, because he knows she can’t do anything to push away those covers from her face.
The Embrace detects rhythmic arm movement that signifies the motion of a seizure. It also measures body temperature. It then uses Bluetooth to send a signal to an app on Elaina’s phone. Her phone then calls her parents and texts them this message, “Elaina needs your help,” signifying that the Embrace detects a seizure. The Ciones have it set so that those messages will break through the silent or sleep modes on their phones. It also tells them where she is, which will be helpful when she leaves home for college or if she’s doing an after-school activity.
Another app logs information about the seizure such as length of time and when it started. That will provide valuable information for how well or not well medications are controlling her seizures.
There has been at least one false alarm. One time, when they were all driving in the car, it went off, but she was fine. “At that point, I thought it might be a wasted effort,” Todd Cione says. And then the night of the nine seizures happened.
“Within a couple of weeks, it’s proven invaluable to us,” Todd Cione says.
They see it as an extra monitor, like an extra set of eyes, especially when she’s asleep or taking a shower. Each day after school, Elaina charges the Embrace, which has a battery that lasts about 30 hours each charge.
“I like wearing it a lot,” Elaina says. Her friends just think she has a cool watch until she tells them what it does.
“It’s piece of mind for parents and family,” Elizabeth Cione says. “For giving her more independence, it’s hugely helpful.”
When Elaina is wearing the Embrace, “I won’t have to be on edge,” Elizabeth Cione says.
The Embrace cost the Ciones $249, plus there’s a $20 a month monitoring fee. They haven’t tried to go through their insurance yet, but because it is FDA-approved, that is a possibility.
Embrace isn’t for every person with epilepsy, though. It probably won’t work for people who have non-convulsive seizures, says Dr. Karen Keough, pediatric neurologist at Child Neurology Consultants of Austin. For those patients, other monitors are in the works, she says.
One thing that can be great about the Embrace or another product like it is if it can accurately log the number of seizures and their length, Keough says. Patients and their parents aren’t always the best about writing down every seizure.
Seizures in the moment also can feel like forever, and sometimes families don’t give accurate information about the length of the seizures. To have actual data about when the seizure started and when it stopped can be helpful to determine how well medications are working. It also can help parents know if they need to give the rescue medication when the seizure has gone on for more than five minutes. Lengthy seizures have been linked to brain damage.
“The ideal goal of treatment is that they don’t have any seizures at all.” Keough says. “The majority of patients do get that with treatment.”