Blade, The (Toledo, OH) (KRT) via NewsEdge :

Aug. 1--TIFFIN -- Jonathan Jeffrey's family quickly decided to have half the toddler's brain removed during a meeting with a Cleveland Clinic surgeon.

Jonathan, whose epilepsy was so severe he had hundreds of seizures daily, likely would die otherwise, they were told. A week later, on Oct. 18, 2007, Jonathan had surgery to remove the diseased half of his brain -- and the 3-year-old Tiffin boy hasn't had a seizure since.

"We weren't really scared at all because there were no other options," said Jonathan's mother, Ashley Schoen. "It couldn't get any worse."

Surgery slowly is re-emerging as a way to treat epilepsy among patients whose seizures cannot be controlled with medication or by other means, including a diet very high in fats and low in carbohydrates.

Epilepsy surgery has been around for decades, but fell out of favor with the development of anti-seizure medications, said Dr. Deepak Lachhwani, staff physician at the Cleveland Clinic's Epilepsy Center.

Candidates for surgery must first try at least two anti-seizure medications. Jonathan tried at least eight medications and the so-called ketogenic diet twice to no avail, so surgery was the answer, Dr. Lachhwani said.

"He's been a normal, naughty little boy," he joked. "He's just a totally new person."

Jonathan, who now enjoys playing with and teasing his 1-year-old sister, Brieanna Jeffrey, and his family plan to attend Cleveland Clinic's pediatric epilepsy support group's second biennial reunion for postsurgical patients today and tomorrow.

At the reunion at the Embassy Suites Hotel in Beachwood, Ohio, they will meet with other families to discuss experiences.

Improved diagnostic testing has helped make surgery a good option for some epilepsy patients since doctors can better pinpoint what part of the brain is affected and who would benefit, said Dr. Steven Schneider, a member of the Epilepsy Foundation's advisory board.

Not only does anti-seizure medication not work for some patients, but it can create other medical problems such as anemia and cause sedative and emotional effects, said Dr. Schneider, chief of pediatric neurosurgery for Schneider Children's Hospital at Long Island Jewish Medical Center in New Hyde Park, N.Y.

"[Surgery] is re-emerging because we've learned that medications are not that benign," Dr. Schneider said.

Fewer than 2,000 epilepsy surgeries a year are performed nationwide, including 250 to 300 at Cleveland Clinic, Dr. Lachhwani said. Cleveland Clinic is one of the busiest hospitals for epilepsy surgeries, he added.

"We are only scratching the surface of the number of patients who could actually be helped," Dr. Lachhwani said.

Jonathan was born with a brain not formed normally, which can manifest itself with seizures, Dr. Lachhwani said.

Seizures were interfering with Jonathan's development, and he was not interacting with his family or eating.

"We realized that we had to act fast," Dr. Lachhwani said.

Ms. Schoen said her son started having seizures a couple of months after he was born.

Initially during a seizure, Jonathan would pull into a jackknife position, with arms and legs up and his eyes rolled back.

Last spring, he was to the point where he just lay in bed and didn't appear to be breathing, she said.

Now Jonathan loves to play outside, said his grandfather, Gene Schoen, of Tiffin, who frequently baby-sits. He can eat on his own too, he said.

Still, Jonathan can't yet walk or talk, and his right side is weak so he mostly crawls like a commando with his legs outstretched, Ms. Schoen said.

Jonathan has the mental development of a 1-year-old, but he is progressing with therapy and may someday be able to attend city schools, Ms. Schoen said. He already has been taken off one of three anti-seizure medications he was on before the surgery, she said.

"He should [develop] all the way, but it's going to take time," Ms. Schoen said.

Contact Julie M. McKinnon at:

jmckinnon@theblade.com

or 419-724-6087.

<>

Return to Epilepsy News