Trevor Barron – Epilepsy Patient Story

Learn more about Trevor's experience with Epilepsy at Children's Hospital.

At age 18, Trevor Barron of Bethel Park is considered one of the best young racewalkers in the world. He has won numerous U.S. national junior championships and is a strong candidate for the 2012 Summer Olympics in London. However, he’s jumped a few hurdles to get to where he is today. In 2000, at age 8, Trevor was diagnosed as having gelastic seizures, a relatively uncommon form of epilepsy. To manage his condition along this journey, he and his family have partnered with Children’s Hospital of Pittsburgh of UPMC literally every step of the way.

The First Signs of Seizures

Trevor’s parents, Bruce and Nancy, saw the first signs of Trevor’s illness when, as an otherwise healthy child, he would burst into uncontrollable laughter at inappropriate times and he periodically began to experience strange  “tingling” throughout his body.

A member of the Mt. Lebanon Aqua Club, Trevor first experienced this tingling while in the pool and held onto a lane rope until the feeling passed. The coaches didn’t notice, and Trevor continued to swim. The situation escalated when, at a Cub Scout meeting, Trevor noticed the tingling again and fell off a railing, hitting his head on a concrete walkway. About an hour later, Trevor began having seizures every 45 minutes, lasting about 20 seconds.  An emergency room exam at Children’s Hospital revealed that Trevor had no brain damage, but he was advised to schedule an appointment with a pediatric neurologist. Following an evaluation by Shelley Williams, MD, Trevor’s seizures were diagnosed. With the use of Tegretol®, Trevor’s episodes gradually decreased and he was able to lead a normal life. When he felt a seizure coming on, he could assume a safe position and then continue on with whatever he was doing at the time.

Living with Epilepsy

During second and third grades, Trevor was homeschooled and kept up a rigorous academic program. He refused to allow his epilepsy or his relatively slow mental processing speed (which commonly accompanies the dysfunctional brain activity that produces seizures to interfere with his achievements. By the time he returned to public school in grade 4, his standardized test scores were in the 93rd percentile. He also kept a full extracurricular schedule, participating in athletics, Cub Scouts, trumpet and art classes, and church activities. For about five years, Trevor’s condition was just a minor hindrance, and it was during this time that his interest in track and field sparked.

At age nine, he would tag along to practice with his sister, Tricia, who was a talented runner. In 2001, she qualified for the national USA Track and Field Junior Olympics in Sacramento, Calif. for a competition. “Trevor wanted to be on that plane with us, and the following year he was,” his father, Bruce, said. To get there he tried almost every track and field event, and he found his niche in racewalking. In 2002, Trevor qualified for the USATF Junior Olympics, finishing second; in 2003 he won the gold medal. He was hooked. Trevor also continued to swim and at age nine defeated western Pennsylvania’s top ten-year-olds in both the 50- and 100-meter butterfly races at a championship meet. In eighth grade, Trevor enjoyed the notoriety of being both a star swimmer and cross-country runner, but he eventually would find that his athletic drive was put to better use on land rather than in the pool. Coaches became concerned about Trevor’s safety after he had a seizure at a meet, one in the pool, and several at practice. He was no longer permitted to participate on the swim team, but this did not hinder him. In fact, it forced him to prioritize his racewalking training.

Epilepsy Focus Mapping

Trevor continued to racewalk, dealing with the occasional seizure, but in 2006 his medication began to fail to control his seizures, requiring a dosage increase. At one point, he was taking twice the usual adult dose.  After he failed a second medication, a child neurologist at Children's, evaluated Trevor.  As a former competitive swimmer, the physician understood what it meant to Trevor to be able to continue his racewalking. She recommended that he undergo epilepsy focus mapping, a procedure during which EEG electrode grids are placed directly onto the brain to map seizure activity and locate their origin. It was determined that the seizures were coming from his left frontal lobe and that there was no abnormality in his brain. Because Trevor had failed two medications and there was only one point of seizure origination, he qualified for surgery.

Following neurosurgery, Trevor experienced some issues with his speech and then more seizures. This sometimes occurs as a result of brain irritation, and Trevor was admitted to the hospital again for 10 days. The frequency of Trevor’s seizures made it necessary for him to take medication. “The period following hospitalization was difficult, as he began having real difficulty with school at this point. He was emotionally drained because he could not concentrate clearly or complete schoolwork as well as usual. The guidance counselor even proposed that he skip the school year,” said Bruce. Trevor would not hear of it. Pushing himself even harder than usual, he maintained his grades and returned to athletics by late September, while still taking one epilepsy medication.  In October, he was the fastest runner on the high school’s cross-country team.  “Trevor's doctor firmly reassured us that these difficulties would subside as Trevor continued to recover, and she was right,” said Bruce.

Living Seizure-Free

Trevor has been seizure-free since September 2006. He was homeschooled during his junior and senior years of high school so he could train with his coach, Tim Seaman of San Diego, Calif., a two-time Olympian. Having graduated in June 2010, Trevor remains under Seaman’s guidance, racewalking an average of two hours daily. Racewalking requires a type of “strut” that may appear odd to one not familiar with the sport, and although it has not caught the collective interest in America, it’s widespread in Europe, Latin America, Russia, and China. "Racewalking has allowed me to make friends all over the world,” said Trevor. “These opportunities are priceless and are what makes the sport so valuable to me.” Most recently, Trevor traveled to Italy to train with friends and competed in his first serious 20-kilometer competition in Finland. His time beat the Olympic qualifying standard, though the qualifying period for the Olympics does not start until 2011. Trevor’s soft-spoken manner does not give way to the fierce determination that lies underneath. Perhaps this is exactly what fuels his success—channeling his energy to all the right places.

Schedule a consultation with Children's Hospital's Pediatric Epilepsy Surgery Program.

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