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Tackling Seizures

MATTHEWS, WALLACE

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Wallace Matthews is a Newsday sports columnist who has covered 10 Super Bowls and profiled Muhammad Ali in the March/April 2006 issue of Neurology Now.

For more information about epilepsy and Sturge-Weber syndrome, see RESOURCE CENTRAL on page 46.

For the past 15 years, Alan Faneca's life has been in the hands of two types of specialists. The most visible of them are football coaches, which figures since he's an NFL All-Star offensive lineman for the reigning Super Bowl champion Pittsburgh Steelers. But the most important of them are neurologists—both for himself and for his 17-month-old daughter.

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On Christmas Eve of 1991, 15-year-old Alan Faneca suffered his first seizure, leading to a diagnosis of epilepsy. Last Fourth of July, his 1-year-old daughter, Anabelle, suffered her first seizure, leading to a diagnosis of a rare neurological disorder called Sturge-Weber syndrome.

Now, both father and daughter control their seizures with related medications. At 30, Faneca hasn't had a seizure since his teens, and even then they weren't the grand mal seizures that most people associate with epilepsy. By contrast, Anabelle frightened Faneca and his wife, Julie, with convulsions. But now that Anabelle's seizures are under control, a relieved Faneca can say of kids like his, “They can grow up and do everything that you can—they just have something they have to watch out for.”

Somehow, Faneca's epilepsy has never been a hindrance to the pursuit of his dreams, and he's hopeful that Anabelle will be able to live her dreams, too.

The fulfillment of Faneca's ultimate dream occurred last February when the Steelers rolled to a 21–10 victory over the Seattle Seahawks in the Super Bowl. Best of all, the offensive guard, who toils at a position in which anonymity generally indicates success, caught the nation's attention by delivering the block that sprung Pittsburgh halfback Willie Parker for a record 75-yard touchdown run—the turning point of the game and the high point of Faneca's career.

No wonder Faneca can look at the circumstances of his life and say, with all sincerity, “I feel like I am blessed.”

For a teenager growing up in Texas, there can be no greater blessings than those bestowed on a high school football star. The Friday Night Lights beckoned to Faneca, a promising lineman for the Lamar Consolidated High School freshman team. He dreamed of becoming a product of the Texas football factory that produces a never-ending supply of college and pro stars.

On the night before Christmas, visions of gridiron glory danced in his head as he slept in his great-grandparents' countryside home in Richmond, just outside Houston. But Faneca's dreams dissolved into something perplexing and frightening.

“In the middle of the night, I just kind of thought I was having a bad dream or a nightmare,” he recalls. “I think I was crying and screaming. I was wandering around the house as if I had to go somewhere. I really didn't know what was going on.”

Nor did Faneca's concerned parents. They calmed their son down and got him to go back to sleep. By the time he woke up Christmas morning, Faneca had forgotten about the night before and “moved on.”

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But his parents suspected their son had suffered more than a bad dream that night. They had gotten a clear view of what Alan could only sense through the haze of nightmare. “What I was going through—I didn't realize how it looked,” Faneca says.

Not even epilepsy could keep Faneca from following his dream: “I wasn't going to let it. I was going to do everything normal.”

The harrowing sight of similar episodes convinced his parents to take the boy to the doctor. Eventually, a pediatric neurologist came back with the diagnosis: epilepsy. Doctors could only speculate that it might have resulted from three concussions Faneca had suffered as an adolescent, two while playing basketball and the third from a steel spring that recoiled into the back of his head from a homemade bouncing toy.

Once epilepsy was determined as the cause of the seizures and medication was prescribed, Faneca's next question was about his athletic future. “I wasn't thinking about a career in pro sports at all at that point,” he says. “I was more worried about just being able to play sports at all.”

Especially football. “That was a big concern at the time because we're, you know, running around and hitting people with our heads,” Faneca recalls. “But the neurologist, he didn't even blink when he said, ‘No problem.’”

The family was stunned by the neurologist's quick dismissal of their fears. “We had to double-check him,” Faneca says. “My dad and I asked him, ‘You do know what football is, right?’”

This being Texas, of course the neurologist did. And he assured them that he didn't think playing football would endanger Faneca's health with proper treatment. “I took the doctor's word for it,” Faneca says. “I felt confident in what he told me, and especially in the manner that he told it. I don't know if I would have played if there was any doubt.”

With the neurologist's blessing, Faneca's dream proceeded to grow in direct proportion to his body. As a freshman, he had been a relatively unimposing 5-foot-9 and 180 pounds. But by the beginning of his sophomore year, he had shot up to 6-foot-4 en route to his current height of 6-foot-5 and playing weight of 307 pounds.

The only concession Faneca would have to make to his epilepsy was a daily commitment to his medication. Upon diagnosis, he was prescribed carbamazepine (Tegretol), an anti-seizure drug that he takes to this day. Early on after starting the medication, Faneca did have a few seizures, but only until the doctor figured out the right dosage. Since then, Faneca reports, he hasn't had any episodes.

That was an important point to stress at the National Football League's Scouting Combine, a yearly evaluation session at which scouts from all 32 NFL teams scrutinize the nation's top college football prospects with a magnifying glass. The Combine evaluates everything from a player's speed and agility to his intelligence and psychological makeup. Widely coveted college players have seen their dreams die at the Combine.

A young man like Alan Faneca, blessed with size and desire but cursed with a brain disorder possibly caused by head trauma, would seem to have no chance of successfully running the gauntlet of the Combine. And to this day, there remains a hint of wonder in his voice when he tells you, “It was never that big of an issue.” He recalls speaking with just about every NFL team—offensive linemen that big and speedy are literally worth their weight in gold—and, although some teams questioned him in more detail than others, he never got the impression that his epilepsy scared anyone off.

And in truth, the nature of Faneca's seizures—his resemble the complex partial type rather than grand mal—allows him to perform with a disease that would likely disqualify most people.

“I don't fall down or lose consciousness or anything,” he says. “If I had seizures like that, I probably wouldn't be able to play football.”

Faneca's typical seizure would begin with an aura resembling a color wheel spinning that entered his field of vision on the left side and then gradually moved over to his right side. The seizure would proceed with a feeling of agitation and a desire to get somewhere, anywhere, other than where he happened to be. There was the time, for instance, when he got the urge early in the morning to go to school still wearing the shorts and T-shirt he'd slept in the night before. “I didn't even realize where I was or what I was wearing until a friend of mine said, ‘What are you doing here?’” he recalls. “I was like, ‘I don't know.’ I turned around and went home.” Other times, Faneca's seizures would mimic that first one, a feeling of nightmare followed by an awakening to the sight of his concerned parents.

At the 1998 NFL Scouting Combine, the question asked most often was: “When was your last episode?” Then the follow-up: “How are you on your medication?”

“Of course, everybody wanted to hear that as long as I'm on the medication, I'm fine,” Faneca recalls. “At that point, I had already put in four years of college football [at Louisiana State University] and another three in high school, so I'm pretty much dealing with it. I thought I might have to do a little more talking and explaining to the team doctors and trainers, but I actually had to discuss it less than I thought I would.”

Certainly, the Steelers needed no convincing in the 1998 NFL draft. Only 25 other players in the country were selected before the Steelers made Faneca their first pick in the first round. What may have seemed a gamble was justified only three games into his rookie season when Faneca cracked the starting lineup at left guard. Following the 2001 season, he was named to the Pro Bowl as the best at his position in his conference. He has earned the same honor every year since and, now in his ninth season, his $3.9-million salary places him among the highest-paid guards in the league.

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“I'm proud of what I've been able to accomplish,” he says. “And I think of myself as a lucky one, because I'm in a position where I can talk about this and help kids and be a role model to show what can be done out there if you stay in a positive state of mind.”

Faneca had thought he was long done with pediatric neurologists—until last July 4. On that morning, his daughter, Anabelle, put him and his wife, Julie, through what Alan once put his own parents through. But this time it was worse.

“The first seizure was the Hollywood typical seizure,” Julie Faneca recalls. “She was convulsing. With other seizures, she couldn't walk or one side of her body wasn't working properly.”

The first seizure, which they had hoped was just the result of a fever brought on by overnight teething, sent the family to the emergency room. It turned out to be a symptom of Sturge-

Weber syndrome—a non-hereditary condition linked to seizures as well as muscle weakness and developmental delays.

This frightening prospect had been hanging over Alan and Julie Faneca since Anabelle's birth. She had been born with a birthmark on her eyelid which can foreshadow the condition. Although the Fanecas were alerted to the possibility of Sturge-Weber, doctors told them not to be overly concerned since it affects only 15 percent of children born with the port-wine-stain birthmark.

Faneca advises kids with a seizure disorder like his to “be open about it and move on and do what you're able to do.”

As a result, Anabelle's initial seizure caught them somewhat off-guard. But after a 10-day hospital stay, the specter of Sturge-Weber became reality. Anabelle was prescribed a carbamazepine derivative called oxcarbazepine (Trileptal), and she has been seizure-free since July.

“It was scary as hell, and we weren't given the right information at first, so it was a rough couple of days,” Faneca says. “But now we know what it is, and we stay on top of her dosages because as her weight changes we have to make sure we're still giving her the right amount. She's on the better side of the syndrome, if you can call it that. She's fully functioning, and she's doing good.”

Father and daughter have regular appointments with their neurologists. Their medication levels are monitored and adjusted as needed. And every Sunday from Labor Day to Groundhog Day, Alan Faneca goes to work at the unlikeliest of jobs for someone with epilepsy, banging heads with other men his size.

“If my playing football brings even a little more attention to people with epilepsy, that's such a big thing,” he says. “It's a great way to get the message out. I don't know if it's a major achievement. You know, sometimes I don't even think about it.”

Which is a super victory in itself.

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His epilepsy under control, pro football star Alan Faneca now guards his 1-year-old daughter from seizures of her own

©2006 American Academy of Neurology

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