Growing Up with Epilepsy: Cherinee's Story

Cherinee's parents, Coreta and Danny, first noticed a change in Cherinee's behavior when she was five years old. When Coreta introduced her daughter to her co-workers at the office, Cherinee didn't respond. Instead she just stood and stared. Not long after, Coreta and Danny received a call from Cherinee's teacher, who had witnessed something similar. When it was Cherinee's turn to get on the elevator with her classmates, she froze and didn't move, even when teachers called her name. At home, Coreta and Danny began noticing times when Cherinee seemed immobilized and unresponsive.

Building Self-Esteem and Finding Community

Because of this repeated, unusual behavior, Coreta and Danny consulted the family pediatrician, who referred them to a neurologist for testing. After hearing a firsthand account of these episodes from Cherinee's parents, the neurologist ordered an EEG. The results of the EEG showed that Cherinee's strange behaviors were actually absence seizures.

Seizures and Self-Concept

Absence seizures are a type of generalized epilepsy characterized by a blank stare, often accompanied by eye blinking or automatisms. Absence seizures typically last from a few seconds to up to 20 seconds, and frequently occur many times throughout a day. These seizures are often misinterpreted as zoning out or daydreaming.

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As with all types of seizures, absence seizures can affect the way a child is perceived by his or her teachers, peers, and others. Children with epilepsy can sense a loss of control and feel socially isolated. As a result, seizures can have a dramatic impact on a child's self-image.

Learn more about epilepsy and family life

Although Cherinee has no memory of what happens during her seizures, once an episode has passed, she knows that she has had a seizure and is also acutely aware of her peers' reactions. Cherinee says, "Seizures are really annoying, because if I was playing with my friends, then I would have them, and they'd be talking to me and they'd think I'm ignoring them. And then that's how I'd lose them."

Coreta and Danny knew that Cherinee felt alienated at school and was sometimes made fun of by classmates. They became concerned about the social impact epilepsy was having on their daughter, so when Cherinee's epileptologist, Elizabeth Thiele, MD, PhD, suggested a karate program for children with epilepsy, they jumped at the opportunity to enroll her.

Dr. Thiele adds, "Children with epilepsy are very vulnerable to difficulties with self-esteem. They have a disorder that is very unpredictable. They wake up and go to school every morning not knowing if they're going to have a seizure during recess, during gym, or during English class. Because of those difficulties with self-esteem and self-concept, we thought of the karate program as a way to help children work on that and improve that."

Epilepsy and Karate

Because of the abnormal electrical activity in their brains, many children with epilepsy have difficulty with working memory and processing speed. For these children, organized sports such as football and basketball can be frustrating because of the fast pace and the need to quickly read other players' cues. Dr. Thiele recommends karate as a good activity for children with epilepsy because it is an individualized sport, with each child working and progressing at his or her own pace. Yoga is also suitable for similar reasons. Additionally, karate and yoga have been shown to be very effective in helping with balance, focus, discipline and self-control.

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Danny comments, "Just being able to get her into a community of people suffering from the same disease was good for us, and we wanted to be a part of that."

One of the most important benefits of the karate class is the opportunity for participants to meet other children who have similar life experiences. It's a place where children can develop self-confidence and feel "normal," and where their epilepsy takes a back seat to just being a kid. Typically, after a class or two, epilepsy and seizures are rarely discussed.

Cherinee comments, "Meeting other kids who have seizures and making friends makes me feel very happy because I don't feel lonely anymore. Now I know that some people do have seizures like me. It makes me feel confident because now I feel like I can do more things like play sports, and play with my friends outside, and go over to my friend's house and have parties."

Cherinee's Seizure Treatment

Around the same time Cherinee enrolled in the karate program, she switched treatment to the ketogenic diet. She had been on several medications over the course of about five years, with little or no success. At the start of the diet, Cherinee's seizure activity actually increased, which is not uncommon for some children. Her parents considered discontinuing the treatment, but decided to stick with it. About two months later, her seizures stopped. After a year of complete seizure control on the ketogenic diet, Cherinee was switched to the low glycemic index treatment (LGIT) for more meal flexibility.

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Cherinee has now been on the LGIT for about a year with no seizures. About 75 percent of children with absence seizures outgrow them at some point during childhood, and Coreta and Danny remain hopeful that Cherinee will one day be able to come off the diet without seizure recurrence.

Seizure freedom has further boosted the self-confidence Cherinee developed in karate class. Her grades have improved at school and she now receives all A's and B's. She has also started swimming lessons for the first time and is looking forward to getting her driver's license.

Coreta comments, "I think it's absolutely awesome. Now in school she doesn't have to shy away. She can participate in whatever activity she chooses to. And I think that is a big plus so she does not feel isolated. Kids want to be part of something and now she feels like she's a part of a community."