Saturday, September 27, 2003

Spokane

Grateful for small miracles
Ready for anything

Kevin Graman
Staff writer

photo
Brian Plonka - The Spokesman-Review
Kevin Tsuchida, 6, shows off his scar while holding a model of the electronic device implanted in his chest that has halted his daily epileptic seizures. |vp+8<10>

Michelle Tsuchida needed more than a mother's courage to send her son off to his first day of school this year. She needed a magic wand.

Kevin Tsuchida has epilepsy, the kind drugs can't touch.

The 6-year-old is able to attend kindergarten at Lincoln Heights Elementary School thanks to an electronic device implanted in his chest that keeps his seizures in check.

His mother calls it "a pacemaker for the brain."

When Kevin was 31/2 years old, he had his first grand mal seizure.

"We had never seen one before," Tsuchida said. "We didn't know what was happening."

Tsuchida and her husband, Russell, thought their son was choking, and they rushed to clear his throat. Russell Tsuchida's finger was inches away from his son's mouth when the boy's jaw clamped shut. They called 911.

Soon after his first seizure, Kevin was diagnosed with myoclonic astatic epilepsy, or Doose's syndrome, a rare form of the disorder.

Within months
Kevin was having hundreds of atonic seizures a day that knocked him to the ground hard without giving him the chance to protect himself from the fall.

At a time when most parents' biggest challenge is potty training, the Tsuchidas were forced to contend with their son's perpetual split lips, bloody noses, black eyes and chipped teeth.

Kevin was prescribed 11 different medications in less than two years. Last year he was taking 16 pills a day.

None of them worked.

Dilantin, the drug doctors turn to first, caused Kevin to shake, so he could not walk.

He was on Depakote when he caught the sniffles, sparking clusters of seizures that landed him in pediatric intensive care at Sacred Heart Medical Center.

Zonegran had no effect. Adding Topamax didn't help.

In January 2002, Russell Tsuchida, an electronic technician, was laid off from his job at Agilent Technologies. The Tsuchidas had to put their son on Medicaid to continue his treatment.

"We called Social Security to have Kevin declared disabled," Michelle Tsuchida said. "That was a hard phone call."

She said they were told the family had too many assets to receive Supplemental Security Income. But Kevin will have the label "disabled" for life.

As a last resort, the Tsuchidas turned to the drug Felbatol, which is known to cause aplastic anemia and bone marrow depression. Kevin had no other health problems, and they were willing to risk it.

When the Tsuchidas' insurance provider told them that they would no longer cover Felbatol, Kevin's doctor told the insurer to choose between brain surgery or VNS Therapy, the electronic device manufactured by Cyberonics.

The small generator implanted under the skin stimulates the left vagus nerve, which activates various parts of the brain. Physicians can adjust the timing and amount of the electronic pulse the patient receives. A special magnet, passed over the patient's chest, allows a caregiver to provide extra stimulation, which can abort or decrease the intensity of a seizure.

VNS Therapy is used for patients with epilepsy who are resistant to medication. On the downside, it may not work for every patient, or worse, it may cause more seizures, Michelle Tsuchida said. As in any surgery, there is always the risk of infection when the device is implanted.

Kevin's device was implanted on July 17, 2002.

His parents were hoping the device would allow them to reduce their son's medication.

Starting a month after the surgery at Deaconess Medical Center, Kevin went six months without a seizure.

"We did not even come close to expecting this," Michelle Tsuchida said. "With epilepsy, there is disappointment around every corner. A drug doesn't work, or its side effects are bad. He gets hurt from a seizure."

VNS Therapy has reduced both the number and intensity of Kevin's seizures, which now occur every two to three weeks, his mother said.

"Kevin absolutely loves kindergarten," and Tsuchida expects the degree of normalcy the device has brought to his life to last.

According to Cyberonics, clinical studies have shown that the benefits of VNS Therapy, approved by the U.S. Food and Drug Administration in 1997, actually increase over time.

"If we can see 182 days without a seizure," Tsuchida said, "we can see it again."

During their three-year ordeal, the Tsuchidas went to a Seattle doctor for a second opinion. They were told their son's epilepsy was likely caused by a recessive gene one of them carries that can skip generations.

"We don't want to know whose family," Michelle Tsuchida said. "It just happened, and we have to deal with it."

The toughest part for her was having to sit and watch helplessly while her son endured a seizure.

"With VNS, I can wave the magnet and make it shorter," she said.

For now, at least, science has handed her a magic wand.

ĽKevin Graman can be reached at (509) 459-5433 or by e-mail at kevingr@spokesman.com.


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