EPILEPSY: A MATTER OF COPING

Kids have more options for treatment and control

Most kids get permission slips from their parents to go on school field trips, but Lance Rice got one from his neurologist for something a lot more important.

His doctor gave him a note saying that it was OK for him to get a driver's license.

That was necessary because Lance, 17, a Lawrence North High School student, has epilepsy and had to be seizure-free for six months before he would be allowed to get a license.

Lance's control of his epilepsy is extraordinary. He had surgery to remove the part of the brain causing his seizures. His case was unique because Lance also has hemophilia. USA Today did an in-depth story about him and even filmed his operation. It's available online at

Before his surgery on Nov. 9, 2006, Lance had at least two seizures a week and took three medicines a day. He hasn't had a seizure since, and doctors recently reduced his medication. As a result, Lance can't drive again for four months to make sure he's seizure-free without this medicine. But he said he could sacrifice driving if that meant taking fewer drugs.

Lance was able to have the surgery because he has "focal" epilepsy, which means his seizures start from one point in the brain. The surgery is fairly new, and surgeons are eager to provide it for more people with focal epilepsy who don't respond well to medication. Many who have the condition -- and their doctors -- don't know that surgery is an option.

Kristina Potts of Columbus was diagnosed with partial complex epilepsy at age 5. Because her epilepsy doesn't originate from just one area, she's not a candidate for the type of surgery Lance had.

She takes medication to quell her large, grand-mal seizures, and, as a result, has only one of those every few months. But the 13-year-old has several milder "absence seizures" -- the kind that once were called petit-mal seizures -- per week, which typically cause her to slur her speech or to be incoherent. She also gets tired and needs to sleep for several hours afterward. She's tried a variety of medications, but some cause side effects.

Kristina's classmates at St. Bartholomew Catholic School in Columbus have been supportive. They know she has epilepsy and that it isn't contagious but can affect her memory. Each year, her teachers read the book, "Taking Seizure Disorders to School," by Kim Gosselin (JayJo Books, $11.95) to the other students, and the school nurse talks to them about epilepsy, too.

And, now, Kristina has a new "best friend" who helps her cope with her epilepsy. He's a golden retriever named Sparky, who cost $7,000, plus additional money for ongoing training and upkeep. Members of the community, especially schools and Kiwanis groups, helped raise money.

Sparky is a seizure-alert dog, which means that he has been trained to give notice of an imminent seizure. He is trained in Plymouth by Northern Indiana Service Dogs. Such dogs can sometimes sense a seizure 45 minutes beforehand; other times, it's only a matter of seconds.

He knows before I have a seizure and 'tells' my mom," Kristina said. Sparky then lies on Kristina and licks her face until she wakes up from her seizure. Then he lies beside her until she has slept enough to recover from the seizure. Sparky is in training now, learning to retrieve. Since Kristina has tremors, she drops a lot of things, such as pencils, papers, clothes and books.

"I can be more independent with Sparky there to take care of me," Kristina said. "He is my best friend."

According to Janice Buelow, an Indiana University assistant professor of nursing and an expert on epilepsy and youth, the treatments available for epilepsy have increased in the past dozen years. She also is encouraged that the Epilepsy Foundation has been successful in its education efforts so that stigmas about epilepsy have been reduced, and the general public better understands it.

Surgery, medication and a vagus nerve stimulator are some options that those with epilepsy have to cope with or treat their condition. The stimulator is similar to a pacemaker and is implanted under the skin near the collarbone. It's then connected under the skin to the vagus nerve in the neck. A doctor programs the device to produce weak electrical signals that travel from the nerve to the brain, helping prevent the electrical bursts that cause seizures. It's not a cure, and it doesn't work for everyone. Its usage is combined with medication. However, doctors and researchers are encouraged by its effectiveness so far.

For his brain surgery, Lance had to travel to Cleveland. He was born with hemophilia, a rare and potentially fatal disorder in which blood doesn't clot normally. Lance also has hepatitis C, which he got from a blood transfusion when he was younger. Hepatitis C is a liver disease that can lead to liver cancer or the need for a liver transplant.

In Lance's interviews with Y-Press and with "USA Today," the teen was matter-of-fact about his struggles. He doesn't pity himself or wonder "Why me?""It's just one more piece of food on my plate,” Lance said.

He had no qualms about undergoing surgery. “I think (the doctors) were more paranoid than I was,” he said. Lance just wanted the seizures to stop, which would lead to more freedom. He could go out with friends, be away from his parents more and stay out late.

"(The seizures) screwed up my schedule bad. Maybe two years ago, I did very bad at school, and it wasn’t really a good year for me, and not a very good year for the teachers.”

">His seizures don’t last long, but sometimes he’d get sick to his stomach and always needed to sleep afterward for about four hours.

He recommends surgery to anyone with epilepsy who is eligible. He said it’s the most positive thing that has ever happened to him regarding his epilepsy. “I’m actually kind of happy that I’m down one piece of food off the plate.”

For Kristina, epilepsy is something she has to live with for now. But she lives remarkably, according to her mother.

It hurts me seeing her go through (the seizures); it takes a toll on her little body,” said Patricia A. Hughes. “She has difficulty in school because she forgets so much. It bothers Kristina, but she is a real trooper. She says God made her this way so she wants to stay this way. I cry whenever she says that.

"For a 13-year-old Kristina is very aware of her disabilities and she does what she can to overcome them and accepts herself the way she is.”

And Sparky’s there, easing her pain and challenges.

"He protects me and doesn’t let anyone hurt me,” Kristina said. “I am afraid of the dark and many other things, but with Sparky, I don’t have to be afraid anymore."

For more information about epilepsy

         Lance’s Web site: www.caringbridge.org/visit/lancerice 

       Hemophilia of Indiana: www.hemophiliaofindiana.org         Epilepsy Foundation: www.epilepsyfoundation.org

ASSISTANT EDITOR: Beverly Jenkins, 16.

CONTRIBUTOR: Eric Chen, 15. 

Copyright 2007 Y-Press   

• Kids Speak Up!

   

  Youth with epilepsy and adults who advocate for them are invited to participate in Kids Speak Up! 2008, sponsored by the Epilepsy Foundation.
  
  Kids Speak Up! is a national conference for youth leaders, ages 7-16, with epilepsy. Young people at the conference educate elected officials and their staffs about epilepsy research, treatment and discrimination.
  
  The conference will be March 30-April 1 in Washington, D.C.
  
  Scholarships are available to cover travel, lodging and other expenses. Deadline to apply is Dec. 14.
  
  The Epilepsy Foundation of Indiana is actively seeking Hoosier youth and their families to participate.
  
  To learn more, contact Vaneeta Kumar at (317) 876-0600 or (800) 526-6618 or write Epilepsy Foundation Indiana, 3901 W. 86th St., Suite 380, Indianapolis, IN 46268-1799. More information is also available at www.epilepsy foundation.org.
  
  
  About epilepsy

  
  Here are some statistics about youth and epilepsy:
  • About 2.7 million Americans have epilepsy.
  • Among those with epilepsy, one-fourth to one-third are children; in Indiana, 15,000 to 20,000 children have epilepsy.
  • The number of epilepsy cases has remained stable over the past 20 years.
  • New treatments include surgery and the vagus nerve stimulator.