Dr. Ki Lee, director of the Medical College of Georgia Comprehensive Epilepsy Program, right, talks with Karen Gilbert, left, about her son, George, 10. George, who has epilepsy, has a history of seizures. In the background, Dr. David Hale adds notes to George’s chart.
Karen Gilbert's voice sounds
exhausted as she tells the
story of her son's epilepsy.
George was a healthy 5-yearold,
with a head of blond curls
and a love for "Curious George"
stories.
"He carried a big book of those with him everywhere," his mother said.
Then, just before his 6th birthday, George began having seizures. "I didn't know anything about epilepsy or how common it is," Gilbert said. "They call it idiopathic epilepsy, because they don't know the cause."
For a year, George's parents took him to specialists and hospitals in Georgia and Florida. They tried numerous medications, none of which controlled the seizures.
"When he was having a bad spell, he'd seize every 10 minutes, and we'd end up in the emergencyroom," Gilbert said. "They'd give him Ativan [an anti-anxiety agent] and send him home, but the seizures kept building and building."
When the Gilberts moved from St. Augustine, Fla., to Sylvester, they started seeing a new pediatrician, which led to a call to the Medical College of Georgia Comprehensive Epilepsy Program in Augusta. "Dr. [Ki] Lee took the call, and things began to happen," she said.
An emergency helicopter airlifted George and his mother to MCG, which has the only Level 4 epilepsy center in Georgia and South Carolina. A national referral site, the MCG's epilepsy center has received the highest ratingfrom the National Association of Epilepsy Centers and offers a broad range of complex medical and surgical treatments for epilepsy. The staff has cured or significantly reduced seizures in more than 1,000 epilepsy patients in the last 25 years.
Watching her son lie still with electrodes attached to his head, Gilbert said: "He doesn't remember a lot of the seizure episodes, but, through all the testing this past year, he never cries or complains. We used to call him 'Curious George,' but after all this I'm calling him 'Courageous George,' because he gives me courage.
"My comfort level is very high since we've been here. The staff is very good; the communication is excellent."
A specialist that George had seen earlier advised against surgery - saying the seizure sourcewas too close to George's speech center - but Gilbert is hoping that more advanced testing methods will lead to a different answer this time.
Creating seizures
"Ironically, this is a place where we
want epilepsy patients to have seizures,"
said Kim Jaeger, RN, BSN, who has
worked on the epilepsy unit for 14 years.
"I started out as a unit clerk and then worked as a patient assistant while getting my nursing degree.
"This is where I found out that I wanted to be a nurse, and I can't imagine working anywhere else or leaving epilepsy. This is my passion."
Jaeger describes nursing in the epilepsy center as a waiting game followed by intense activity.
"We set patients up to have seizures by
taking them off their medication or using
sleep deprivation. We watch the onitors,
anticipate, and then when the patient
seizes, we spring into action to administer
the drugs and hook up the EEG (electroencephalograph)
or other equipment,
which records brain activity," she said.
Nurses have to think fast on their feet because seizures can turn into emergencies, such as respiratory suppression.
Once the monitors have captured the
data, the nurses must stop the seizure and
sedate the patient so they can perform a
SPECT scan that will locate the seizure
focus.
"Unless we can keep him still for the half-hour scan, it was all for nothing," Jaeger said.
"Our nurses are on the front line;
[they are] very dedicated and a big part
of the team effort," said Lee, a neurologist,
epileptologist and director of the
MCG Epilepsy Center. Epilepsy specialists, neuro-psychologists,
neurosurgeons, nurses and other
allied health professionals at the center
all work together against the common enemy:
epilepsy, a disease that affects more
than 2.3 million people in the United
States.
"We know that seizures are abnormal
electrical discharges in the brain, which
lead to a chemical change," Lee said.
"Trauma, brain injuries or tumors, infections
and genetic disorders can cause
epilepsy. About 80 percent of patients can
control their seizures with medication.
We see those who can't."
Site for testing
A test site for research and clinical
trials, the MCG Epilepsy Center uses the
most advanced scanning equipment to
see inside the brain, including SPECT
scans that use radio isotopes to reflect
blood flow, which can be visualized by
MRI technology to locate seizure activity.
But sometimes patients are sent to a facility at the University of Alabama for an MEG (magnetoencephalography) scan, which records magnetic activity generated by the brain's electrical activity and can pinpoint the seizure focus with greater accuracy.
"This is a noninvasive test, but it's very
expensive. The machine costs $3 million,
and Georgia doesn't have one. We
should," Lee said.
If testing methods don't work, doctors
can open the skull and place electrodes
directly on the brain to pinpoint the seizure
hotspot. The aim is to find the spot
within millimeters so that only the misfiring
cells are removed during surgery.
A Wada test, named after Dr. Juhn
Wada, is done before any epilepsy surgery
to determine how it would affect other
parts of the brain, such as those that
control speech, memory or motor skills.
Even if there are some bad side effects, surgery may be a better option than years of seizures that kill brain cells, reduce IQ and can cause death, Lee explained.
"In many cases, we can end seizures
with surgery or reduce them using new
surgical therapies, such as Neuropace, a
device implanted in the brain to neutralize
electrical discharges," Lee said. "Our
goal is to have patients become seizurefree.
We recently had a patient who had
seizures every night for 10 years. He's 46
days out from his surgery without any
seizures."
Lee, who trained for 12 years to become an epilepsy specialist, loves his job.
"It's fulfilling but demanding," he
said. "I'm thinking about my patients all
weekend - about what we could do better.
I know my decisions could change a
person's life."
The staff meets for a surgery conference
every Monday. When a patient has
been evaluated and tested, the staff studies
all the data.
"Everyone has to agree on the best treatment option, and, if there is more than one, those are presented to the family and the family decides," said Pam Culberson-Brown, RN, MSN, clinical nurse specialist. "We don't offer surgery unless the benefits outweigh the risks - if we think it will help. We expect a great reduction in seizures and a leap into a better quality of life."
Some children who can't be treated
by surgery or medication are offered the
ketogenic diet. The stringent, high-fat,
low-carbohydrate diet developed at Johns
Hopkins Hospital in Baltimore reduces
seizures in some children, research has
shown.
"We teach families how to measure everything
gram by gram, create meal plans
and alleviate the side effects. Patients
can't deviate from the prescribed meals
at all, but there are creative ways to make
them more palatable," said Amy Helms,
MS, RD, LD, CNSD, pediatric dietitian
at the MCG Epilepsy Center. "It takes a
highly motivated family and patient to
stick with it, but the potential rewards are
great."
Although researchers aren't sure how
it works, about one-third of patients who
maintain the diet for two years see a
90 percent to 100 percent reduction in
seizures. Another third see a reduction of
about 50 percent.
"When a child is having seizures every day, families are willing to try anything that might help," Helms said.
Tough on families
People don't realize the toll that
chronic illness takes on patients and
their families, Culberson-Brown said. "It
affects people's jobs, their ability to travel,
schooling, activities, their quality of life.
No one can really understand what these
families go through."
As the liaison between members of the
medical team and patients, Culberson-
Brown sees her role as one of an advocate
and an educator.
"After rounds, I go back and talk with
families who need more clarification and
answer their questions," she said.
Culberson-Brown does medical
research, contacts insurance companies
and locates community resources to help
her patients and their families.
"Working here gives you keen sensitivity
and empathy for what others have to
go through," she said. "We try and support
them, and they appreciate it."
The center recently hosted a reunion of between 150 and 200 former surgical patients.
"That's a time when we hear how well
they're doing and how it's changed their
lives down the road," Lee said. "That
gives us the motivation to do an even
better job. Thanks to innovations in the
treatment of this disorder, we are now
able to end seizures, without side effects,
in a majority of patients."
The odds are encouraging for patients like "Courageous George" Gilbert and his family. His tests showed that surgery was possible and he has been scheduled for it in a couple of weeks. The prognosis looks optimistic.