Five things you might not know about epilepsy

epilepsy isn't just seizures

The classic image of epilepsy is of someone falling to the ground and shaking uncontrollably — but that stereotype isn’t always accurate, particularly in kids. Children are usually diagnosed after two or more unprovoked seizures, or after a single seizure if there’s a high chance of further ones. Yet this isn’t a one-size-fits-all condition, and seizure activity can change over time as young brains develop. We asked Dr. Phillip Pearl, director of the Epilepsy Center at Boston Children’s Hospital to share some more surprising facts about this condition.

Childhood epilepsy is on the rise.

Epilepsy isn’t just for adults. In fact, children are one of the fastest-growing groups of Americans being diagnosed with the condition: It affects an estimated one percent of kids and is the third most common brain disorder.

“Epileptic” is out.

Just as the language surrounding other conditions has changed, experts now recommend using terminology that helps lift the stigma of epilepsy. Rather than referring to “epileptics,” they suggest “people with epilepsy.” Likewise, “anti-epileptic drugs” are now called “seizure medications” — simple wording changes that keep kids from being defined by their disease.

Location matters.

Doctors now largely classify seizures based on where they occur in the brain and the amount of awareness a patient has during the seizure. For example, focal seizures start on one side of the brain, while generalized seizures initially affect both sides of the brain. When it’s not clear where seizures originate, they’re labeled unknown onset. Further subcategories depend on whether a child is aware or impaired during a seizure.

Symptoms vary.

Tremors, convulsions, and loss of consciousness are all classic signs of some types of seizures, but symptoms of epilepsy can range from barely noticeable to quite dramatic, depending on the area of the brain affected. Some kids might stare into space, feel confused or even giggle uncontrollably, while others might vomit, have breathing difficulties or lose bladder or bowel control.

It’s not just about seizures.

Sometimes, epilepsy can cause changes in behavior and personality or lead to other neurological problems, learning difficulties, depression or anxiety. Some doctors are starting to use the term “epilepsy spectrum disorder” to reflect the complex nature of the condition.

Have more questions? Dr. Pearl and other experts from Boston Children’s Hospital and Epilepsy Foundation New England will be sharing the latest information about the condition at the annual Clavin Conference For Family Education In Epilepsy on May 6, 2017. In addition to learning about about hot topics like medical marijuana, ketogenic diets and seizure first aid, parents and kids will have the opportunity to meet and share their experiences with other families.

Learn more about the Epilepsy Center at Boston Children’s Hospital.