Barbara Kroner has watched her daughter suffer from over 15,000 seizures. She has long slept in the same bed as Ellie, who has Aicardi syndrome, so that she’s there to help if the 14-year-old suffers a seizure.
“I don’t want my child having a seizure by themselves in the dark. I want to be with her,” said Kroner, a senior epidemiologist at RTI International. “Even if I don’t do anything, holding her hand, comforting her and telling her it’s gonna be okay helps me feel like I’m doing something. It helps her feel more comfortable till it’s over.”
One night in bed, she thought to herself, “I wish there was something that would tell me she’s having a seizure during the night.” Not long after she reached out to co-workers with an idea.
That thought was the impetus for RTI International obtaining a $1.6 million grant from the National Institutes of Health to develop a prototype for a mobile seizure alert system. Kroner is the co-principal investigator on the project.
Existing wearable devices to identify seizures rely on detecting movement. While useful for some seizures, those sensors won’t identify many types, in which physical movements are less pronounced. Kroner’s device is expected to measure respiration and heart rate through sensors worn on the body. RTI International has experimented with measuring muscle contraction, but probably won’t use it. Kroner expects the finalized device to successfully detect a broader range of seizures.
The group is doing preliminary testing to develop an algorithm that weighs respiration and heart rate patterns to identify seizures. Ultimately those who suffer from seizures could enjoy more independence, and caregivers would have less to worry about.
“Sleeping is probably the biggest benefit,” Kroner said. “There are a lot of parents that make some accommodation, somebody sleeps with the child, someone shares a room. There’s a dog or a baby monitor.”
Because caregivers can’t be near a child 24-7, it’s difficult to always know if and when seizures may have happened. This lack of information puts physicians at a disadvantage as they attempt to craft a treatment plan that best suits the nuances of the patient’s condition.
With the seizure alert system, named the ESAP, exact details on when seizures occur could be transmitted to a smartphone or monitoring system. Kroner’s group is still deciding where to relay the information.
One potential yet unproven application of the device would be to reduce the frequency of SUDEP, sudden unexplained death in epilepsy. The device might be able to identify a decline in vital signs and send an alarm to a caregiver.
RTI International hopes to have a product on the market in three years.