Taking epilepsy down a notch

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Ian Moore wants people to know it's OK to be his friend. Although he has epileptic seizures from time to time, he can't make anyone else sick. He lives a basically normal life for a 7-year-old boy. A resident of Rosedale, Md., in Baltimore County, he will be a second-grader at Lutherville Laboratory in Lutherville, Md., this fall. He likes basketball, soccer, lacrosse, swimming and gymnastics.

"Sometimes, I can't control my body," Ian says. "Everybody should know what a seizure is. You can't catch it from me."

Ian is one of more than 100 youth advocates, ages 7 to 16, who visited the District this year as part of the Epilepsy Foundation's Kids Speak Up! program, which is headquartered in Landover.

The advocates routinely share their stories to raise awareness about the chronic condition, which affects more than 2.7 million persons in the United States.

In March, Ian visited the offices of Sens. Paul S. Sarbanes and Barbara Mikulski and Rep. C.A. Dutch Ruppersberger, all Maryland Democrats, to talk about epilepsy, says Ian's mother, Trish Moore.

Mrs. Moore says she believes the diphtheria, tetanus, and pertussis immunization Ian received as a child set off his epileptic seizures, which started 12 hours after he got the vaccine.

However, there is no data in controlled studies thus far that proves vaccination is a cause of epilepsy, according to the Epilepsy Foundation. The disease is the most common neurological condition in children in the United States, producing approximately 45,000 new cases every year. Though many seizures are the result of head trauma, infection, stroke, tumors or genetics, more than half of the cases have no apparent cause.

Because Ian's paternal grandfather had seizures and relatives on Mrs. Moore's side of the family also had seizures, doctors say Ian had a lower threshold for epilepsy.

Since taking the medication Trileptal, Ian usually has only one seizure a week, lasting about 45 seconds, Mrs. Moore says. He usually has tonic-clonic seizures, which means he goes into convulsions. She is hoping he will outgrow the condition.

"We make sure he gets enough sleep," Mrs. Moore says. "Without adequate sleep, the seizures seem to happen more frequently. He's very good about going to bed on time. If we have too many activities or stay out at a party, I notice he has more seizures."