The Story of Epilepsy

More than 65 million people in the world live with epilepsy and every one of those people have their own story.

When Scott Perry, M.D., an epileptologist and medical director of Neurology, talks about his patients, the one word that comes up over and over again is “story.”

“Because every kid’s epilepsy is different,” Dr. Perry said. “They might fall into broad categories, but even in the broad categories, there are differences. Even people who have a well-defined syndrome aren’t going to be exactly alike.”

Dr. Perry compiles tons of data, research and examination on each of his patients to find out about that child’s story.

He says each kid will tell his or her story over time. But first the epileptologist needs a lot of history and information for that patient:

• The age that the child’s first seizure started.
• What the child was like before having the first seizure.
• The types of seizure they’ve had.
• How the seizures evolved (Are the seizures the same every time? Have they changed in some way? Has the number increased?).
• The child’s EEG findings.
• The MRI findings.
• Was the child healthy before seizures? Did the child have developmental delays or health problems
• How has the child responded to treatments?
• How has the child changed over time?

“It’s like a constant flow chart or a computer algorithm,” Dr. Perry said. “All of these pieces are coming in and you are connecting them. You narrow it down and it’s this. But you get more tests and now it’s this. Sometimes you arrive at what you think it is and then things change and you go, ‘I was wrong. It’s not this. It’s this.’”

To treat a child’s epilepsy, the epileptologist plays detective much of the time. The doctor is looking for that one clue or fact that will help determine the best possible treatment for the child. For some kids, it means a trial and error of many different medications before success. For others, it may eventually mean surgery.

“You are looking for that child’s story. When I’m hearing the history of that child, I’m looking at the type of seizures. Every part of the brain does something different. If I can understand a seizure from the beginning to the end and the sequence of events of that seizure, I can get a better idea of where it probably starts and then spreads to different places. Some of these changes are incredibly subtle on an MRI. You might have an MRI that was read stone cold normal and to be fair, it probably looked that way. But once you have more information and that child’s story, you might see there was something there that wasn’t obvious when you were looking at the entire brain.

“With every piece of that story, you can get a better diagnosis.”

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