BOSTON (CBS) – Epilepsy is a tough condition to live with and, despite treatment, many patients often still have seizures.
But now there’s a new way to warn their families when there is trouble.
Leonor Colon’s 12-year-old son, Gali, has suffered from seizures all his life after having a stroke at birth. Even on multiple medications, he still has a seizure a week, usually at night.
“My biggest fear is that if I’m not here to help him, that when I wake him up, he will be dead from seizures,” she told WBZ-TV.
It’s a scary but real possibility.
“They can happen at any time point. For example, at night when nobody is there and nobody is watching,” he said.
But soon somebody – or something – will be watching.
It’s the so-called “seizure watch,” made by a company called Empatica.
It senses rapid arm movements, that a patient undergoing a gran mal seizure might experience, and increased sweat production, similar to a lie detector test.
The watch has been tested on up to 200 children and adults, including Gali, at both Boston Children’s and Brigham and Women’s Hospital.
So far, the results are good.
“The watch is, in general, very reliable. The sensitivities are in the high 90 percentages to pick up generalized tonic clonic seizures,” Dr. Loddenkemper said.
Those episodes are also called grand mal seizures. But Dr. Loddenkemper hopes the watch can identify more subtle seizures through its sweat detectors.
There was at least one drawback.
“When we put the watch on children in the monitoring unit, there were some false alarms due to patients playing video games.,” Dr. Loddenkemper said.
It’s a small downside given the huge upside.
“It gives me a peace of mind that I know while I’m sleeping and he’s sleeping that the watch is going to alert me that he’s having it and I can just run to him,” Leonor Colon said.
“This work is triggered by some very personal experiences of patients calling my office telling me that their child died in sleep from seizures,” Dr. Loddenkemper said.
“I dread these calls. I don’t want to get any more of those calls and we’re working very hard to prevent those calls.”
If the clinical trials continue to go well, Dr. Loddenkemper hopes the seizure watch will become available in a year or so.
The research is being funded largely by charitable donations.
For more information, visit the Boston Children’s Hospital blog or call the Boston Children’s Epilepsy Center at 617-355-7970.
If you would like to support this project, you can donate to any of the following organizations:
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