Stories about: epilepsy

Care for epilepsy gets Aaron back in the game

Dr. Phillip Pearl

I had my first seizure when I was 10 years old and in fourth grade. We had been to a Celtics game the night before and I was just lying on the couch when I fell off and onto the floor. One of my brothers was in the room with me and called for my mom. It was really scary for all of us. About a week later, I had another seizure in my sleep, so my parents decided to take me to Boston Children’s Hospital to be evaluated.

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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.

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First a birthmark, then a rare-disease diagnosis

Brielle, who has Sturge-Weber syndrome, peers over a wooden fence as she plays outside
Brielle plays near her home in Rhode Island.

Two-year-old Brielle Coutu loves listening to music, dancing and eating enough cheese that her mother, Heather, often wonders aloud, “Are you a mouse?” Brielle loves to play outside and is usually a chatty, happy-go-lucky little girl. But, sometimes, she can be overwhelmed by the excitement of gathering with family and friends.

“We think she has some sensory sensitivities related to her Sturge-Weber syndrome,” says Heather.

Brielle was born with what’s known as a port-wine birthmark on her face. It is aptly named for its dark reddish color. Port-wine birthmarks can be present on otherwise healthy babies. But Heather and her husband, Justin, quickly learned that this type of birthmark can alternatively be symptomatic of a worrisome underlying condition.

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Our son’s journey with CSWS epilepsy

csws-epilepsy

Our son Joshua was born in 2010, a happy and healthy 9 pounds. At the age of 2, he was a loving and sweet little boy who loved books, trains, puzzles and playing with his older siblings and friends. He was highly intelligent, speaking in clear four-word sentences. He was curious about the world and loved to learn.

At the age of four, Joshua began to decline in his social skills, becoming anxious, withdrawn and easily angered. He developed a stutter and had difficulty finding words to express himself. He often would not answer when spoken to and began exhibiting autism-like symptoms.

Within a year, Joshua began having facial twitches and became increasingly clumsy. His behavior became more impulsive and unpredictable, making it difficult for him to remain in school or even attend friends’ birthday parties. Fine motor tasks that were once easy became increasingly difficult. He was frustrated, and simple attempts to comfort him sparked aggressive verbal outbursts.

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