Stories about: epilepsy center

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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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At the age of four, Joshua began to decline in his social skills, becoming anxious, withdrawn and easily angered.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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For teen with epilepsy, nurses are like a second family

epilepsy-emma-1When Emma Johnston steps onto 9 Northwest at Boston Children’s Hospital on a recent Friday afternoon, she’s like a celebrity surrounded by her fans. Nurses come out in droves with big hugs and warm smiles to greet the 13-year-old. They all know her. They have all cared for her, some since she was a baby.

Emma’s been a familiar face at Boston Children’s since her first seizure, at 7 weeks. Since that time, the nurses on 9 Northwest have made her feel special whenever she’s here.

Genetic mutation causes difficult seizures

Although Emma has gone for long periods of time without seizures, they have become more difficult to control in the past two and half years. Last November, after testing at the Boston Children’s Epilepsy Genetics Program, her family discovered why this might be the case: Emma has a very rare SCN8A gene mutation. Kids with this type of mutation have seizures that are notoriously hard to treat.

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Epilepsy: Top tips and tricks from our staff

In honor of Epilepsy Awareness Month, some of the nurses and social workers who support the Boston Children’s Hospital Epilepsy Center share their top epilepsy tips.

Chris, a social worker in the Epilpsy Center

Chris’s tip: Get support!

Chris Ryan, LCSW, recommends that you consider therapy for your child or family — or both. Kids with epilepsy are at higher risk for behavioral and mental health conditions, like anxiety, depression and attention-deficit/hyperactivity disorder (ADHD). They may also struggle with the lifestyle restrictions epilepsy can cause. A therapist can help your child learn to cope with these conditions.

Chris says joining a support group can also help kids with epilepsy — and their families — learn how to adjust to living with epilepsy.

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