Kristina's Formula for Success
By Loretta Coureas
Kristina Foster knows what’s good for her. She knows exactly what she must do to be free of the epileptic seizures that can come and go when she least expects them.
A regimen of medications and adherence to a strict diet help this vibrant, self-confident teenage girl avoid a dreaded seizure that can rob her of consciousness and challenge her dignity.
Her parents, Doug and Karen Foster of Virginia Beach, suspected something was amiss even before Kristina’s primary care physician, Harvey J. Kagan, picked up on a comment from her mother during a routine physical when Kristina was 10.
“The exam was over and we were about to leave Dr. Kagan’s office when I asked him if he knew anything about absence seizures,” Karen recalls. She had read about such seizures online.
“I had been noticing little changes in her,” Karen said. “She wasn’t paying attention while reading, and she couldn’t work math problems without having to start over.”
Dr. Kagan knew very well that some children experience the almost imperceptible episodes of simply “blanking out” associated with absence epilepsy. He began to reexamine Kristina.
As he faced her and asked her questions, he saw first-hand what worried Karen. Kristina stopped responding for a few seconds and just stared, Karen recalls. “And when she blinked, she didn’t realize the lapse had occurred.”
The pediatrician immediately referred the family to pediatric neurologist Matthew Frank at CHKD, where five board-certified pediatric neurologists treat hundreds of young epilepsy patients. Dr. Frank confirmed that Kristina was suffering from absence seizures (previously called petit mal seizures). EEG tests that measure brain activity helped to define the presence, extent and frequency of Kristina’s seizures.
The first line of defense against epileptic seizures is medication. But there are many types, and the neurologist must try to find the combination that works best for each patient. Dr. Frank started with the ones most effective in the majority of pediatric patients and monitored Kristina for effectiveness and side effects.
Kristina remembers a host of medications that made her feel bad at first. “I was the queen of side effects,” she says today. “I think I experienced every side effect listed for every drug. It was very frustrating, but Dr. Frank was determined to get just the right combination for me.”
“She was not typical,” Dr. Frank says. “We had to be creative.”
Kristina’s determination to have a normal life helped her through what she calls a terrible time: her middle school years. “I would throw up daily and I gained a lot of weight. It was very hard before it got better,” she said.
Kristina and Dr. Frank continued to search for a medicine that could control the seizures without unacceptable side effects for several years. But just before her 16th birthday, her condition worsened. She began having tonic-clonic (also called “grand mal”) seizures. On the day of her birthday, she had such a seizure while getting ready for her party.
“As Kristina fell, she hit her mouth on a bathroom fixture and knocked out two teeth,” her mother recalls. “We canceled the party and raced to the dentist.”
Kristina remembers only the aftermath. “There was blood everywhere and everybody was hollering and upset. I was really embarrassed. I had to have some major dental work after that.”
Together with Kristina and her family, Dr. Frank decided to try a different approach to preventing seizures: medication in combination with a medically-restricted diet that has been effective for patients with epilepsy. The modified Atkins diet – nicknamed “MAD” – is a less-restrictive variant of the ketogenic diet, which has been used as an epilepsy therapy for 90 years. The MAD diet brought control of Kristina’s absence seizures, which went a long way toward improving her schoolwork.
A clinical dietitian at CHKD helped Kristina plan her special diet. “I count carbs and eat fats,” Kristina explained. Her favorite meal is medium-rare steak with garlic salt, broccoli with cheese sauce and digestible-carb pasta. “The dietitian taught me how to regulate the carbs, and my dad created a software program for me so I could keep track daily,” she said.
The diet was an important breakthrough, but it did not solve everything at once, so the search for the right drug treatment continued. Finding the right combination of diet and medication was the key for Kristina. And after a few more months of trial, Dr. Frank decided on an unlikely drug that had proved effective in some rare cases. It was not a natural choice, he explained, but when used in combination with the modified diet, it might just be as close to perfect as they would come.
It was. And Kristina has embraced the remarkable change in her life. Delighted by the success of her special health regimen, she reminds herself with various alarms to take her meds and snack throughout each day.
She has experienced one or two breakthrough seizures since embarking on the new treatment nearly two years ago, but adjustments to the medications have helped.
Even before the seizures were controlled, Kristina began reaching out. At school in health class, where she once had a dramatic episode, she opened up to her classmates. “I did a first-aid presentation in class to explain about epilepsy, and I was very open about the fact that I have it,” she said. “I found that others can be understanding and even want to learn more.”
With newfound confidence, she started a support group with other teens she learned had epilepsy. “It’s so much better when we share our experiences and help others understand,” she said.
Thanks to her tailor-made treatment program, Kristina is a confident young woman who left for Taylor University in Indiana in late August with a merit scholarship, destined for a career in special education, helping children who experience problems in the classroom because of health issues.
“She is an amazing person,” Dr. Frank says of one of his favorite patients. “She was selected to appear before Congress in support of the Americans with Disabilities Act Amendments of 2008.” She returned to Washington in September of that year to participate in a ceremony on the steps of the Capitol, after Congress passed the bill unanimously.
Kristina attributes her effectiveness as a speaker to her participation in the Kids Speak Up program of the national Epilepsy Foundation.
“She’s quite proactive and doesn’t shy from putting herself out there to help others understand what it’s like to live with epilepsy,” Dr. Frank said.
Throughout Kristina’s childhood and teen years, CHKD was a big part of her life. Her dad says, “From Dr. Kagan and Dr. Frank, to time spent in the hospital and the labs, the MRIs and EEGs, the dietitians and even the emergency room, we were definitely frequent fliers.” But she still found time to perform in her school chorus, church choir, musical theater and school plays and to take voice lessons and be editor of the Kempsville High School yearbook staff. She managed to bring home top grades consistently and earned a place in the school’s Honor Society.
Kristina knows what’s good for her because she learned the hard way, and now she doesn’t let the threat of a seizure hold her back. “I’m grateful for all the help I’ve had,” she said.
Dr. Kagan practices with CHKD Health System’s Pediatric Specialists and Dr. Frank practices with Children’s Specialty Group PLLC at CHKD.
This story was featured in the fourth quarter 2009 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.