COURTESY THE QUEEN'S MEDICAL CENTER
Dr. Alan Stein, epilepsy specialist at The Queen's Medical Center, uses computer images of brain wave patterns to identify the sources of epileptic seizures.
Calming the ‘storm’
The serious dangers of chronic
epilepsy can be controlled
with specific medications
When her Son was diagnosed with epilepsy at age 4, there was no facility here for severe cases, said Sheila Bierwert, executive director of the Hawaii Chapter of the Epilepsy Foundation.
"He started having daily seizures. We actually ended up moving to the mainland where he had brain surgery and half of his brain removed at age 6 1/2 years," she said. She eventually moved back to Hawaii where she had family.
"We just celebrated four years of being seizure-free. He's doing great," said Bierwert of her 10-year-old son. "Things are getting better -- just bringing Dr. (Alan) Stein over here, who is a specialist in epilepsy," improved diagnosis and treatment for complex cases, she said.
Stein came here in 1998 as the state's first epileptologist, a neurologist specially trained to treat epilepsy, and he set up a Hawaii Epilepsy Center at St. Francis Medical Center.
He is now medical director of a new epilepsy monitoring unit that opened in March at The Queen's Medical Center to diagnose and treat people suffering from chronic, uncontrolled seizures.
"The good news is that epilepsy can usually be treated and well controlled with medication," says Stein, also president of the Hawaii epilepsy chapter.
"We are hoping to increase the awareness of the disorder, to get the word out that effective treatments are available, and diagnosis is the first step toward managing this treatable disorder," he said.
Epilepsy is a disorder in which clusters of nerve cells, or neurons, in the brain sometimes have an "electrical storm" because of abnormal electrical activity. This can affect awareness, emotions and behavior and sometimes cause convulsions, muscle spasms and loss of consciousness.
Stein operated on Robert Silva's brain in July 2001 at Kaiser Permanente's Moanalua Medical Center.
Silva, 29, now on the Hawaii epilepsy chapter's board, said he was in the third grade when his disorder was first noticed. "Who knows if it was there before?"
He said he has had no seizures since the surgery and is taking only one pill daily instead of 20 previously. "I don't even think one pill is doing anything," he said, adding that he would like to be off all medication.
After his surgery he was able to take his 1965 Mustang out of storage, where it sat for 11 years. His goal is to fix it and drive it.
"People take driving as if it's no big deal, but when you can't drive you're restricted from a lot of things, especially in high school."
He said he was unable to get a driver's license until he was a high school senior and had been free of seizures for two years.
"One month later, I had a seizure when driving. I flew through the windshield (of his Mustang)."
Silva began driving again in December and has enrolled in Honolulu Community College's automotive program to help him work on his car.
He has a University of Hawaii bachelor's degree in Hawaiian studies but could not find a job in that field, so he taught algebra and geometry for three years at Damien Memorial High School before going to HCC.
Stein, formerly of the Johns Hopkins University Medical School in Baltimore and the Barrow Neurologic Institute in Phoenix, conducted tests to diagnose Silva's seizure disorder when he was at St. Francis.
He is doing similar work in the new epilepsy monitoring unit at Queen's but said "it's bigger and better than what was available at St. Francis," with a specialized team and the latest technology.
Patients stay five to seven days in a private room with an electroencephalogram hooked to their heads. The EEG maps brain waves to pinpoint the source of abnormal electrical activity and where it is going in the brain, Stein said.
Beth Freitas, registered nurse and manager of Queen's Neuroscience Institute, said an EEG is similar to an EKG. "An EKG measures the electrical currents pulsing through the heart, and an EEG maps the electrical pulses throughout the brain."
She said normal brain activity produces a recognizable pattern, and epileptic seizures produce specific abnormal patterns.
Four patients can be monitored simultaneously and continuously by staff in the new facility to observe when they have seizures, Stein said. All activity is recorded on the computer and monitored by video.
At St. Francis, patients had to have a family member stay with them and alert nurses when they had a seizure, he said. "That used to be a big hurdle for someone to spend a whole week with them."
He said medications are slowed or stopped while the patient is on an EEG.
"We want them to have a number of seizures so we can record them and see what they look like, what part of the brain they come from. This helps us decide whether to operate."
There are a lot of misconceptions about epilepsy, and the stigma associated with it often keeps people from seeking treatment that could help them have normal lives, Stein said.
He said an estimated 13,000 to 15,000 people in Hawaii have the disorder, and about 8,000 to 10,000 are controlled with medications. The others are considered candidates for more intensive evaluation because medications do not work well to control seizures, he said.
"Many very successful, well-known people manage their epilepsy effectively and lead productive lives," Stein pointed out, citing as examples actor Danny Glover, Hawaii U.S. Rep. Neil Abercrombie and former Congressman Anthony Coelho, who wrote the Americans with Disabilities Act.
Besides pamphlets, videos and books about the disorder, the epilepsy chapter has a social worker available for information and referrals from noon to 4 p.m. on Thursdays at the office, Suite 207, Kukui Health Building, 245 N. Kukui St. Call 528-3058 for an appointment.
An adult support group meets at 7 p.m. the first Wednesday of every month at Paki Hale, by Kapiolani Park. A support group for children also meets occasionally with picnics or other events.
More information also is available on the Epilepsy Foundation of America Web site, www.EFA.org, and the Queen's Medical Center Web site, www.queens.org.
