Middletown boy’s life is a balancing act

As the children in the Tender Loving Kare kindergarten enjoyed a Valentine’s Day party, 6-year-old Peter Serwik’s mind went blank and he fell out of his chair.

That’s the last time he had a seizure – a vast improvement from his infancy, when Peter would experience about 30 a day.

Peter has epilepsy, a condition defined by seizures. On Wednesday, he’ll address the nation’s leaders on Capitol Hill as the Delaware representative for Kids Speak Up!, a national program in which children petition congressional leaders for money for various diseases and disorders.

“If we don’t get [money] we’ll have seizures every day,” said the young Middletown resident.

An estimated 2 million Americans have some form of epilepsy, including about 10,000 in Delaware. Half those cases are like Peter’s, in which the cause is unknown. Epilepsy also can result from head trauma, brain tumors, poisoning, infection and maternal injury, among other problems.

Abnormal electrical discharges in the brain cause seizures, disrupting the usual brain activity. Prolonged seizures lead to as many as 42,000 deaths a year in the United States, according to the National Epilepsy Foundation. But most seizures last less than five minutes.

While a person having an attack may look as if he’s in pain, he’s usually unaware of what’s happening. Still, seizures can put people in precarious situations.

Dr. Donna Stephenson, Peter’s neurologist, recalls a patient who drowned in her bathtub after a seizure. Other patients have broken bones.

“The last thing some people remember is the event that led right up to them having the seizure,” she said.

That’s what it was like for Peter on Valentine’s Day. He can’t fully explain what a seizure feels like, but he knows he wants it to stop.

“It’s scary when my body starts shaking, and when it’s done I’m still scared,” he said.

Early diagnosis

Several months after Peter was born – five weeks early, on Nov. 8, 2000 – Ellen and Piotr Serwik noticed their son couldn’t crawl far without falling over.
They took Peter to Stephenson, who works at Neurology Associates in Newark, and he had a seizure during the exam. He was diagnosed with idiopathic epilepsy, meaning no cause has been identified.

A CT scan showed that his problems weren’t due to his bone structure. MRIs of his brain showed no physical abnormalities. He also had several EEGs, in which electrodes were placed at specific points on his head to measure his brain’s electrical activity. It was determined that abnormal brain waves were being sent from the left temporal lobe, but doctors couldn’t explain what was triggering the attacks.
“They’ve located the ‘where’ but not the ‘why,’ ” Ellen Serwik said.

Peter is like other boys his age, but Ellen has to watch out for problems that wouldn’t enter the minds of other parents. For example, if he has a seizure while playing on a jungle gym, he could break a bone. In the past he’s broken his glasses, so he now wears expensive, unbreakable glasses.

Baby gates still block the staircase at the Serwiks’ home, since there remains a fear that Peter could fall down the steps during a seizure. The bathroom door remains open, in case he has a seizure while in the tub. And latches are fixed to the front door, back door, garage door and basement door at a 6-foot-high level, so he can’t wander off.

”His motor skills can still function during a seizure and he could walk around, unaware of his surroundings,” Ellen said.

Ellen said Peter is fortunate in that he can come out of his seizures on his own.

“We’ve never had to call paramedics, but you never become comfortable seeing your child that way,” she said.

Twenty percent of epilepsy cases develop before children turn 5. Many parents know little about the condition when they first hear their child has it, said Barbara Blair, executive director of the Epilepsy Foundation of Delaware, which sends packets of information to the newly diagnosed. Some people who visit the local foundation have experienced seizures their entire lives but weren’t diagnosed with epilepsy until they became adults, she said.

“The Serwiks adjusted quite nicely,” Blair said. “Others never get comfortable.”

Finding the proper treatment

Several medications are available to treat epilepsy, but patients have to “find the right drug with the best seizure control with the least amount of side effects for a given individual,” Blair said.

Stephenson, who sees Peter every three to six months, said most epileptic medicines work by blocking the spread of the brain’s abnormal electrical rhythms, but each has unique side effects.

Some epileptics experience seizures only at night, so opt not to take medicines. Others are implanted with a device, the vagus nerve stimulator, that sets off a charge to help prevent smaller seizures. Brain surgery to excise the malfunctioning portion is another option.

Peter was first put on Topamax. It controlled his seizures but made him highly sensitive to heat. So Ellen put him on Keppra. That also controlled his seizures, but Ellen said it caused him to become aggressive and have temper tantrums.

When they got the results of an EEG that found Peter’s problem was coming from his left temporal lobe, he was put on Trileptal. Ellen said Trileptal makes Peter sensitive to sunlight – although that’s not one of the reported side effects – but she has kept him on that medicine. And instead of enlisting him in a soccer program, she enrolled him in karate classes.

“We stopped the outdoor sports and moved him into indoor sports,” she said. “We have to do a balancing act with the seizure control and the side effects.”

Peter will have to be aware of his condition – and the problems it can pose – for the rest of his life, Ellen said. Some people can go decades without a seizure, only to have the attacks return.

“You can’t ever get into a comfort zone,” she said. “Because it’s a danger zone.”