- The Washington Times - Monday, July 3, 2006

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.”

Visiting the school nurse several times a day was common for 10-year-old Josh Danoff of Reisterstown, Md., also in Baltimore County. He will be a sixth-grader at Franklin Middle School in Reisterstown. He had petit mal seizures, during which his eyelids would flutter and he would not remember the incident.

In August 2003 he had brain surgery to remove a benign tumor. He has been seizure-free ever since. He also no longer takes medication. He also is a youth advocate for the Kids Speak Up! program. In March, he spoke to Rep. Benjamin Cardin, Maryland Democrat, about the disease.

“It’s important to tell other people about epilepsy so they don’t make fun of other people for having seizures,” Josh says. “People with epilepsy are normal people. They will just have seizures once and a while.”

Although there are about 20 types of epileptic seizures, the seizures generally are classified in two categories: partial seizures or generalized seizures, says Dr. Brien Smith, medical director of the comprehensive epilepsy program at Henry Ford Hospital in Detroit. He is a member of the board of directors of the Epilepsy Foundation. He had epileptic seizures until undergoing brain surgery to remove a tumor at age 30.

Partial seizures, which also are called focal seizures, usually start in the temporal lobe in the brain. A simple partial seizure stays in a small area of the brain. A complex partial seizure moves to the other side of the brain. A partial seizure with secondary generalization spreads quickly throughout the whole brain, he says.

In generalized epileptic seizures, the entire brain short-circuits at once, usually with no warning, Dr. Smith says. With this type of brain malfunction, petit mal seizures, also known as absence seizures, can take place. The person “misses” a few seconds and then returns to normal. Myoclonic seizures cause the person to jerk briefly. During a generalized tonic-clonic seizure, also known as a grand mal seizure, the person might have a vocal outburst, stiffen and fall to the ground. Sometimes, he or she stops breathing. It usually is over in one to two minutes, Dr. Smith says.

Electroencephalograms and magnetic resonance imaging are the main procedures used to diagnose and pinpoint the type of epilepsy a patient has, Dr. Smith says.

“Half to two-thirds of people are controlled with seizure medications,” Dr. Smith says. “Thirty to forty percent of people are severely affected and continue to have seizures despite medical treatment.”

People with partial seizures who cannot control their epilepsy with medication can consider surgery, Dr. Smith says.

About two-thirds of the people who have surgery on the temporal lobe will be seizure-free following the procedure, says Dr. Gregory L. Barkley, clinical vice chairman of the department of neurology at Henry Ford Hospital in Detroit. He is a member of the board of directors of the Epilepsy Foundation.

“If medication doesn’t work and surgery isn’t feasible, there is a stimulator on the market called a vagus nerve stimulator that can give relief and reduce seizures dramatically in some of the people in whom it’s implanted,” Dr. Barkley says.

Other stimulators are in clinical research trials, and new medications are continually being tested, Dr. Barkley says.

“Our goal is that not another moment should be lost to seizures,” Dr. Barkley says. “We want everyone to be free of seizures and free of side effects from treatment.”

One of the biggest challenges with many patients is that the cause of their seizures is unknown, says Eric Hargis, president and chief executive officer of the Epilepsy Foundation.

In a number of communities, people have ascribed spiritual significance to epilepsy, suggesting that the person could be possessed by the devil, Mr. Hargis says. He says he hopes false notions surrounding the disease can be dispelled.

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