May 12, 2008 in City
Connect: Young voice travels far for epilepsy
Kevin Tsuchida is a precocious boy.
A fourth-grader at Wilson Elementary School, the 10-year-old has a vocabulary like an eighth-grader. He doesn’t simply like dinosaurs, he studies paleontology. He’s not just into bugs, he enjoys entomology. He doesn’t have a rock collection – no, he’s interested in geology.
During spring break in April, Tsuchida made a trip to Washington, D.C. He was on a mission representing an estimated 350,000 Americans younger than 17 who – like Tsuchida – have epilepsy.
“I’m really just like anybody else,” he said. “I just happen to have seizures.”
This is the second time Tsuchida has gone to Capitol Hill as part of the Epilepsy Foundation’s Kids Speak Up! campaign.
The first time he was 7 years old.
“You wouldn’t believe this kid,” said his mom, Michelle Tsuchida. “He got the microphone, got up on the stage in front of 100 people and said, ‘Hi, I’m Kevin, I have epilepsy.’ I’m always surprised by how well he handles all of it.”
Kevin was 3 1/2 when he had his first grand mal seizure. His parents were terrified. They had no idea what was going on. Epilepsy can be difficult to diagnose, but soon the Tsuchida family had a name for what was going on with Kevin: Doose’s syndrome, or myoclonic astatic epilepsy.
“He started having so many seizures, we just didn’t know what to do,” said Michelle Tsuchida. Combinations of common epilepsy drugs didn’t make much of a difference, she added; the seizures kept coming.
After three years of trial and error with various medications and doctors, Kevin had a vagus nerve stimulator implanted in 2002 and that made a huge difference. That procedure was reported by The Spokesman-Review in 2003.
“Suddenly, he could go months without a seizure,” said Michelle Tsuchida. “Finally, something worked.”
The implant, best described as a pacemaker for the brain, has been replaced once since 2002. The replacement is supposed to last five to 10 years.
Today, Kevin has about 15 seizures lasting no more than 3 seconds every day, his mom said. Doctors don’t think the seizures interrupt his thought process.
It certainly doesn’t seem like anything is interrupting this straight-A student.
He flips through the photo albums chronicling his trips to Washington, D.C., and explains the sights and places.
“This time we didn’t talk to any of the Congress people,” Kevin said. “But we talked to all their aides – that’s almost as good. We asked them to find money for a cure for epilepsy and for research.”
It was Epilepsy Foundation Northwest that nominated Kevin for the trip.
“Kids Speak Up! is meant to be a training opportunity for young people. It’s a training to help them find their story and tell it,” said Ryan Oelrich, program manager for the Spokane office of Epilepsy Foundation Northwest. “And Kevin has just been through so much. That’s why we decided to nominate him again. He’s really special to us.”
The training has paid off. Recently, Kevin talked to his class about what it’s like to have epilepsy.
“They asked really good questions,” he said. “They wanted to know if you can catch epilepsy like a cold. And I said ‘no, you can’t.’ But you can get seizures if you hurt your head really bad.”
He also gave his classmates instructions on what to do if he has a big seizure.
“First, you put me on my side, and you should remember I can’t swallow my tongue,” Kevin said. “People think you can, but you can’t. It’s attached in your mouth. Then remove any dangerous things there could be around me, and just wait until it passes.”
What’s the most important advice?
“Don’t panic,” he said. “You don’t have to panic.”
Kevin spends most of his time like a lot of fourth-grade boys. His favorite toys are Legos, especially the Star Wars and Indiana Jones collections.
“I’m a Make-a-Wish kid – I got to go to LegoLand in California,” he said. “I loved all the Star Wars Legos there. It was really cool.”
In school, his favorite subject is science.
“You’d think they could use stem cells to cure epilepsy,” he said before going to look for his Star Wars Legos.
Michelle Tsuchida is the one who worries.
“We are out of meds now,” she said while Kevin played. “It means we’ve tried all 14 different meds that are approved in the U.S., and none of them make any difference.”
The family, which includes Kevin’s dad, Russell, takes it a day at a time.
“There are some things we don’t do. We don’t have baby sitters, because what if something happens?” said Michelle Tsuchida. “If we go somewhere, we bring him, or we don’t go. And we’ve stopped asking ourselves why Kevin got epilepsy – it’s just how it is.”