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Radical Treatment Brings a Newfound Joy

By Alice Reid
Monday, January 14, 2008

Lisa Hill says she is the mother of a miracle child.

Three years ago, her son Spencer, then 9, was into his 16th month of severe epilepsy, suffering dozens of seizures a day that doctors at Children's Hospital had been unable to halt with medication or brain surgery. Finally, he descended into a kind of epileptic inferno. He was in a constant state of seizure, the left side of his brain an electrical firestorm.

The Northern Virginia youngster was near death when his doctors took a radical step. On Jan. 16, 2005, they removed the entire left hemisphere of Spencer's brain -- the source of the seizures, but also, in most of us, the source of language and the ability to move the right side of the body.

The prognosis: Spencer would live but probably would never again speak or walk.

Several days after the operation, as his family hovered around him in the intensive-care unit at Children's, someone asked, "Spencer, where does it hurt?"

That was when the miracles began. Spencer spoke. "Everywhere," he said.

"The whole ICU turned around and stared," Hill said.

Months of therapy followed, and today, at 12, Spencer not only speaks, he makes jokes. He runs well enough to play tag football with his pals. He recently returned from Colorado, where he learned to snowboard. "It was fun," he said. "Even the wipeouts were fun."

He is mainstreamed in all his sixth-grade classes except for those that depend heavily on reading and writing. Last week, he earned bragging rights: He got an A on a math quiz.

Best of all, he has been seizure-free, and he takes no medication.

"Had he been somewhere else other than Children's," Hill said, "I don't think we would have had the same outcome."

Hill recounts a host of things Spencer can do that no one ever thought he would. His peripheral vision, once narrowly constrained, has broadened to a more normal range. His right arm hangs immobile inside the orange Denver Broncos jersey he loves to wear, but he can move his right shoulder up and down.

At his sickest, Spencer was at Children's 150 days in 18 months. The family was so well known to staff members that neurology chief Steven Weinstein often met them as they came to the emergency room door, and Hill had the pager number for more than one Children's neurologist.

"They realized we were living through hell," she said.

Fortunately, cases such as Spencer's are few, but epilepsy is not uncommon. Children's Hospital treats about 8,500 to 9,000 affected patients a year.

When a patient experiences a second seizure, Weinstein and his colleagues begin treatment with an array of medicines and sometimes surgery aimed at halting the brain disturbances that cause seizures.

The most heartening fact is that "two-thirds of the children who have epilepsy outgrow it," Weinstein said. "At some point in the developmental process, when the brain has been finally 'cooked,' the seizures will stop."

Weinstein said he deals with as many psychological issues as medical ones. Families feel their lives have been turned upside down. "We try very hard to have the family able to go back to a normal life," Weinstein said.

Camp Great Rock, near Buckeystown, is a big help. Started by Sandy Cushner-Weinstein, a social worker and the doctor's wife, the two-week sleepover camp is just for epilepsy patients. It's a place where they can be themselves and have fun, and if someone has a seizure, it's no big deal.

When it became clear that Spencer's surgery had spared him further seizures, his first concern was whether he'd still be eligible for camp.

"The answer Dr. Weinstein gave him was, 'Spencer, you've had more than 1,000 seizures. You're grandfathered in!' " Hill said.

This summer, Spencer will make his fifth visit to the camp.

How to Help

Our campaign for Children's Hospital ends Friday, and at $288,083.99 -- including $13,765 from the annual Christmas party of the law firm Hoffman, Wasson & Gitler -- we are far from our goal of $500,000. Remember: Every penny goes to help defray the cost of treating any area child whose family lacks the means or the insurance to pay for the world-class care Children's offers.

So please, if you haven't yet, write a check or money order payable to Children's Hospital and send it to Washington Post Campaign, P.O. Box 17390, Baltimore, Md. 21297-1390.

To donate online, using a credit card, go to http://www.washingtonpost.com/childrenshospital.

To contribute by phone using Visa or MasterCard, call 202-334-5100 and follow the instructions. Gifts are tax deductible, as allowed by law. Thank you!

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