A Future Without Seizures
University of Chicago Medicine epilepsy experts help five-year-old become seizure-free
Five-year-old Nathan Kalina of Naperville will enter kindergarten this fall after spending the summer in day camp: playing games, enjoying field trips, and romping in the pool. He loves playing with action figures and acting out scenes from his favorite movies.
The scene two years ago was very different. After getting a few reports from daycare about unexplained falls, Nathan's parents started to notice him having minor seizures. His mother, Megan, wasn't too concerned at first; both she and her father had had childhood seizures and recovered from them without incident. Then came Nathan's first tonic-clonic seizure (formerly known as a "grand mal" seizure), a major event involving his whole brain and body. A trip to a local emergency room for basic tests led to an electroencephalogram a few days later. All the while Nathan was having more seizures, large and small.
"We went from zero to crazy in a matter of days," Megan said.
Medication helped some. Nathan's father David, a teacher in the Naperville schools, devoted his summer to adjusting Nathan's regimen. But in the fall, the seizures ramped up again. One specialist suggested a high-fat ketogenic diet, which has been shown to help some children with epilepsy -- but it didn't help Nathan. "Feeding a 4-year-old picky eater on meat, cheese and cream was hard on us and started making him sick," Megan said.
By December 2010, Nathan had stopped going to preschool and had to have a nanny at home. He was having 60 to 100 epileptic seizures a day, determined to be caused by myoclonic astatic epilepsy (also known as Doose syndrome). The Kalinas were at their wit's end.
The family of one of David's students recommended the University of Chicago Medicine Comer Children's Hospital, where the Kalinas met Michael Kohrman, MD, director of the pediatric epilepsy program. After trying one more medication with some success -- but not enough -- Kohrman recommended implanting a vagus nerve stimulator (VNS).
The vagus nerve, which originates in the brain stem, supplies nerve fibers to various organs. The stimulator, powered by a small battery, sends a tiny electric shock to the nerve every five minutes. The goal is to block faulty brain messages that can lead to seizures.
In the spring of 2011, a VNS device was implanted in Nathan's chest. Following the procedure, Nathan's seizures immediately dropped to one a week, and within a month, he was seizure free.
"He's completely recovered and suffered no long-term damage," said his mother, Megan. "His milestones have caught up, he's growing like a weed, and we can breathe again."
Nathan has now been free of seizures for more than a year. He no longer has to wear the helmet and face mask that protected him from seizure-related falls. Except for a little tickle in the back of his throat every five minutes, he is unaware of the electric shock being delivered by the VNS. And, while his parents have a special magnet that can induce extra electrical impulses to stop a seizure, it's rarely needed.
"No one understands 100 percent why VNS works, but it can reduce seizures in the right kind of patient," said neurosurgeon David M. Frim, who performs surgery on both adult and pediatric epilepsy patients, and consulted on Nathan's case. Nathan's apparently complete recovery isn't typical, but approximately 30 percent of epilepsy patients treated with VNS experience a major improvement in seizure control while another 30 percent show some improvement.
The University of Chicago Medicine adult and pediatric epilepsy treatment centers have brought relief to hundreds of seizure patients who thought they were out of options. The program offers surgical procedures that aren't available elsewhere in the city, as well as multiple techniques for imaging the brain and for studying its electrical wave patterns. Patients also benefit from clinical trials of medications and other treatments that University of Chicago Medicine physicians and researchers participate in routinely. "We have one of the most active epilepsy research programs in the city," Kohrman said.
The National Association of Epilepsy Centers recognizes both the adult and pediatric programs as Level 4 treatment centers -- the highest ranking possible.
The Kalinas were thrilled with Nathan's care. "We had a phenomenal experience with the hospital," Megan said. "Everyone was great."
The family often turned for support to Patti Ogden, a nurse practitioner who leads the pediatric epilepsy program's VNS team and periodically checks and adjusts Nathan's VNS. "We call Patti with most of our smaller questions, and we love her to death," Megan said.
The Kalinas are continuing to wean Nathan from some of the anti-seizure drugs he's taking, which can have side effects ranging from insomnia to attention deficits. They plan to have Nathan tested at the University of Chicago Medicine this fall by neuropsychologist Scott Hunter, PhD, to check for any lingering attention or other issues as a result of the seizures or the VNS.
Meanwhile, Nathan is starting his school year without special accommodations -- no helmet, no aide -- after finishing up a summer filled with day camp activities and family trips to major league ballparks in several cities.
Says Megan, "All in all, things are going great!"
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Dr. Kohrman sees patients at the following practice locations:
The University of Chicago Medicine Comer Children's Hospital
5721 S. Maryland Avenue
Chicago, IL 60637
University of Chicago Pediatric Specialists
Merrillville, IN 46410
The quest for a cure
Susan Axelrod co-founded Citizens United for Research in Epilepsy (CURE) in 1998 out of frustration after not being able to find successful therapy for her daughter Lauren's seizures.
The Axelrods (Susan's husband, David, is an advisor to President Barack Obama) tried countless drugs, special diets and surgery, with no effect. Lauren, now in her 30s, suffered brain damage. But she has been seizure free since 2000, thanks to a single drug that proved effective for her.
Since its inception, CURE has raised more than $18 million for epilepsy research and awareness.
University of Chicago Medical Center President Sharon O'Keefe was named to the national organization's board in May. "I have seen how epilepsy can disrupt the lives and plans of patients and their families," said O'Keefe, the mother of a child with epilepsy. "I also have seen remarkable progress toward understanding this disease through innovative research. I look forward to this new role in helping speed up the pace of progress in understanding, treating and, we hope, curing this disorder."
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A brain-mapping technique developed at the University of Chicago Medicine puts data from brain scans through a complex mathematical algorithm to produce a 3-D image of the brain that often shows exactly where the seizure activity is occurring. This helps epilepsy specialists decide whether surgery is the best option for controlling the patient's seizures.
David M. Frim, MD, PhD, chief of neurosurgery, says it makes his job much easier and simpler. "We can concentrate on finding the safest and least traumatic way to remove the seizure-causing area," Frim said, "because we're so sure that we are operating on the correct tissue."
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This story originally ran in the Summer 2012 issue of Imagine, a quarterly magazine published by the University of Chicago Medicine.
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