Stories about: experimental epilepsy treatment

Our patients’ stories: Taking back the night in epilepsy

When Ian was diagnosed with epilepsy at age 3, his doctors said he’d outgrow it before he turned 5. But just the opposite happened: four months later, he abruptly started having much more frequent seizures, up to 40 a day.

With medications, the seizures stopped. But still, something wasn’t right. Ian seemed to be losing cognitive skills and language. He seemed to be in a fog.

“His outward seizures were controlled, but he wasn’t learning well,” says his mother, Michelle. “His development just stopped. He couldn’t learn anything new. We tried—I’m a teacher—and he was in a great special education program that gave him lots of support. But if he learned something one day, he couldn’t retain it.”

The family saw doctors at two different hospitals near their home in the upstate New York area. All of them said that learning disabilities tend to go with the territory in epilepsy. They suggested that Ian work with his therapist, his special ed teacher and his occupational and physical therapists to make the most of what he had.

But Ian’s parents weren’t willing to take Ian’s lost milestones as a given. They decided to take Ian to Boston, having heard that Boston Children’s Hospital had a good epilepsy program.

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One patient's story: How brain stimulation is keeping my epileptic seizures at bay

For nearly 10 years, Kate suffered from severe epileptic seizures and lived with life-altering side effects from her many medications. In this video and in her first-person story below, Kate shares her story about how an experimental treatment has changed her life.

Kate’s story

Thanksgiving of 1999 was going to be a great day. My mom was coming home from the hospital after having surgery, and our entire family would be together for a big dinner that afternoon. It was shaping up to be a great holiday—that is, until I had my first seizure. I had the seizure at about 7 a.m. but I don’t remember anything except waking up in the local emergency room with a terrible headache and not being able to move my left side.

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