New Treatments Offer Hope–

A Young Woman’s Quest For Normalcy  While Living With Epilepsy

By Kendra Bobowick

From the moment she was born Kate Bayles, 21, was destined for a different kind of life.

“It’s not really a life, it’s not something a normal person would want to deal with,” she said. Kate, who has epilepsy, alternately struggles between thoughts of a normal life and trying to cope with seizures.

“Normally I’ll grab my head — my mom describes it like I’m trying to hide myself. During the big ones I’ll scream,” she said. Kate also demonstrated her reaction to a seizure by raising her hands up to her face and hunching toward her cupped palms. Shaking off the demonstration and letting out a deep breath Kate leaned against the soft leather couch and jiggled one of her feet.

During November, National Epilepsy Awareness Month, Kate offers the explanation that head trauma she incurred during a breech birth likely caused the onset of epilepsy when she was a child.

Despite her hopeful smile and the bright-eyed expression of a young woman piqued by life’s possibilities, Kate admits to having few friends and confidants beyond her family, which includes her parents, Jim and Trina Bayles, her older sister, Jen, and a twin sister, Brooke. She is only recently beginning to step out of her cocoon formed by what her father refers to as “a horrible, horrible disease.”

She speaks of her years growing up as though they are rooms still just a short walk down the hall and decorated with fear, frustration, admitted anxiety and doubt that often exacerbates her seizures.

The attacks in which Kate said she “might stare or fall to the ground,” could be as frequent as seven per day when her anxiety was bad. The attacks have been a constant companion since the age of nine when she experienced an “absence” seizure. “My mom told me about it. I was in the car and I started to say weird, random things and I snapped out [of reality],” Kate said. Her father also remembers an episode.

Mr Bayles explained, “The first time I remember was she wanted to get on the bus, but she was already home, she had lost the whole day.” Offering his years of experience watching his daughter struggle, he said, “As horrible as the disease is, it’s isolating.” He noted one side effect saying, “Emotionally she’s young, she was cut-off and for a time home-schooled and when she went back it was difficult.”

Kate’s older sister, Jen, hopes that a little more understanding will also diminish an invisible wall of isolation. She said she wants to raise awareness.

“So people won’t freak out and stare — if one less person does that to somebody else, it was worth it,” she said. Both Jen and her father spoke quietly as they faced one of the hardest realities of epilepsy. Kate is at times prone to despair. Mr Bayles said, “I don’t think about it all that much, I don’t want to. She is an upbeat person but every once in a while it’s, ‘Why me?’” he said.

With his mood brightening, he remembers an inspiring point of view expressed by Marcus Aurelius (a Roman emperor) that says essentially that no one is given more than they can handle, and Yale New Haven Hospital has added to Kate’s family’s ability to handle her epilepsy in the past two years. A combination of medications and an innovative treatment have made a difference in the last two years where previous brain surgery and other procedures have offered little improvement.

The trial treatment offers Mr Bayles a glimpse into the future to look upon a life he hopes to see his daughter experience.

With a mixture of reality and hope, Mr Bayles said, “I expect she’ll still have seizures and she will never drive, but I hope someone falls in love with her and her with him, and life will turn out well.”

 

Innovative Treatment

Kate is one of fewer than 90 people in the country to receive a neurotransmitter implanted in her head that detects the start of a seizure, “and breaks up most of them,” according to Mr Bayles. He said, “It senses the seizure and sends out a pulse and breaks them up, but not all of them.”

Kate was the first patient to receive the transmitter at Yale two years ago during a clinical trial. Current treatment stems from Yale New Haven Hospital Epilepsy Center, which has recently extended the trial involving the neurostimulator manufactured by Neuropace.

Normally, seizures had plagued her once or twice a day, but the treatment in combination with medications has dwindled the count to one or two a week. Mr Bayles and Kate both speak fondly of Dr. Robert B. Duckrow, the director of the UConn Epilepsy Program and an alumnus of the Yale residency program, who was recruited to bring special expertise in neurophysiology and electronic methods to the program. He now supervises an advanced program in neurostimulation, according to the Yale website, http://epilepsy.yale.edu/history.html.

The Yale Epilepsy Center began about 40 years ago (1967) and was one of the very first such centers in the world. Further, one of the world’s foremost epilepsy specialists, Dr Dennis Spencer, MD, the Harvey and Kate Cushing Professor of Surgery, chairman of the Department of Neurosurgery and director of the Yale Epilepsy Surgery Program played a founding role in the Yale Epilepsy Center. In the mid 1970s, then student Dr. Dennis Spencer completed neurosurgery residency and continued on the faculty with special interest in epilepsy surgery replacing a previous doctor who had taken another position. Soon thereafter Dr Susan Soloway (later Spencer) after completing neurology residency at Yale joined the team with a special interest in epilepsy surgery. She assembled the cases that had been studied and treated by doctors including Dennis Spencer and reported one of the earliest outcomes of this diagnostic and therapeutic approach using intracranial recording. The Yale Epilepsy Center quickly became one of the largest and most important epilepsy surgery centers worldwide.

 In a recent interview, Dr Spencer explained, “The key to an epilepsy center like this is we carry out [treatment] as a team…our surgeons, psychologists, social workers focus on each individual patient.”

Dr Spencer looks to the future and already within his sight along the medical horizon are advancements in treatment. He said, “In the next 10 to 20 years we’ll replace current surgery…” He envisions treatments that more effectively “modulate and restrain seizures.”

More information about the transmitter used for Kate is available at neuropace.com. Additional background about the Yale program, Dr Spencer and Dr Duckrow is available at http://epilepsy.yale.edu/history.html. The Yale Epilepsy Center was one of the very first, a pioneer in epilepsy intensive monitoring, epilepsy surgery, antiepileptic drug pharmacology and clinical trial methodology.

An Improvement.

Kate noted that since the trial began, “the seizures have decreased; everyone believes it might be me pulling myself together to get over it.”

She said, “I am a lot more relaxed.” Her anxiety still lingers, however. Regardless of her nervousness, Kate speaks hopefully.

“Maybe it will get better though.” She may not be entirely seizure or anxiety free, but other aspects of a previously secluded life have changed. On top of the hope Kate adds a touch of humor that finds her, at last, in the kitchen.

“I have never been able to cook omelets or bake potatoes or make sandwiches,” she said. “I could never do it by myself because I was afraid I would cut or burn myself [accidentally].”

She has one cautious hope: getting to know people her own age. Kate has recently attended her first of a support group series in Brookfield. She said, “I don’t really have any friends to speak of and socialize with, but I started a support group where other people there have the same problems as I have.” She had used online support as a “back-up source,” until now, she said.

This past Halloween season saw Kate transformed into the center of attention as her sister, Jen, with the help of others including friend Jen Gill, arranged a first-time gala to raise awareness.

The “Think Positive Gala,” was the result of weeks of planning, fund-riasing, and organizational efforts. Jen rented the Holiday Inn in Danbury, went business to business earning both contributions and items for auction, and enlisted the local clothing boutique, Style, to produce a fashion show. By the end of October this year the gala had garnered more than $3,000 that Jen contributed to the Epilepsy Foundation of Connecticut. According to Jen the foundation may develop a board devoted to organizing the gala annually.

The awareness campaign has another aspect that comes from Kate. While traveling home from Yale one afternoon she saw a bumper sticker and thought, “Wouldn’t it be nice if we had something for epilepsy.” The reminder is now in the form of a two-toned bracelet that prompts, “Think Positive, Epilepsy Foundation.”

Mr Bayles said, “It was great from my perspective; it allowed Kate to go out and dance. [The gala] should be about younger people. It allowed people like Katie to go out and if they had a seizure, then they had a seizure — that’s what we’re here for.”

Jen wondered aloud about starting a non-specific group with the purpose simply of bringing people together. “So no one has to feel like they have to have a disease to be with other people,” she said. Kate’s mother, Trina, attended the first support group with Kate.

Mr Bayles fundraises through swimmingforhope.com, which originally raised money for juvenile diabetes. He now fundraises for the Epilepsy Foundation of Connecticut.