Picturing the Future of Epilepsy Care
Dr. Rusty Novotny opens the door to better epilepsy care
through his focus on integrated, multimodal imaging.
Daniel Kelley's recent epilepsy surgery left the 3-year-old (pictured with younger brother, Jack) free from seizures and with his motor skills intact.
Epilepsy is as puzzling as it is frightening.
In seven out of 10 cases, the cause of
the condition’s sudden and dangerous
seizures remains unknown.
The encouraging news is that
doctors are constantly improving
epilepsy treatment while collecting new
clues about the causes for the disease.
Nationally respected neurologist
Dr. Rusty Novotny, medical director of
our epilepsy program, is helping Seattle
Children’s become a leader in better
understanding this mysterious brain
disorder.
Dr. Rusty Novotny is a leader in developing new ways to combine images from different imaging systems – like PET scans, MRIs and CT scans – to create a clearer picture of what is happening in a person's brain.
Novotny joined Children’s from
Yale University, where he led the
Yale–New Haven Hospital pediatric
epilepsy program and developed ways
to combine images from different
imaging systems to create a more
accurate picture of a patient’s brain.
This work opens the door to improving
the diagnosis of different forms of
epilepsy and better gauging how
therapies are working. It also helps
surgeons better map critical areas
of the brain before operating.
“We had some of the most advanced
imaging systems available, but we
weren’t maximizing them,” notes
Dr. Jeff Ojemann, neurosurgeon and
director of surgery for the epilepsy
program. “Rusty is helping us marry
those technologies and gather critical
information that wouldn’t otherwise
be apparent.”
Hearing the whispers
Normal brain function is made possible
by millions of tiny electrical charges
passing between nerve cells in the
brain and to all parts of the body.
When a person has epilepsy, sudden
and intense bursts of electrical energy
interrupt this process.
The bursts cause seizures that range from momentary lapses of attention to
prolonged convulsions. Whether they
occur every few months or dozens of
times a day, the seizures can interfere
with a child’s learning and development
and even cause permanent brain
damage.
To identify forms of epilepsy and
decide how to treat it, doctors use a
variety of imaging systems to study
the brain structure of and metabolic
activity in affected patients. Each
imaging system relies on different data
sources – gamma rays from positron
emission tomography (PET) scans,
radio waves from magnetic resonance
imaging (MRI) scans or X-rays from
computed tomography (CT) scans – to produce separate snapshots.
Integrated imaging combines this
disparate data – plus results from other
sources such as electroencephalogram
(EEG) tests – to produce a single
digital picture and then processes it
to identify features that separate
images don’t show on their own.
Better pictures help identify
various forms of epilepsy, better
gauge how therapies are working
and better map critical areas of
the brain before operating.
Ojemann compares the difference
between integrated imaging and
conventional imaging to listening
to five different people whisper.
“You might not be able to hear them
if they whisper alone, but if they all
whisper at the same time, you can.”
In other words, the whole (an
integrated image) is more revealing
than the sum of the parts (different
images viewed individually).
“We have our boy back”
Tristan Carroll, 8, was having up to 50 seizures a day until Dr. Russell Saneto prescribed the exacting high-fat, low-carb ketogenic diet.
Strokes, brain tumors and trauma
cause most epilepsy in adults, but the
underlying cause of most epilepsy in
children is genetic. Although there’s
no cure for most forms of the disease,
medication helps two out of three
children control their seizures. Our
epilepsy program offers the latest
drugs – and several alternatives if
medications don’t work.
Options include surgically removing
or disconnecting misfiring tissue,
implanting an electronic device known
as a vagus nerve stimulator, and putting
children on a special high-fat, low-carb
diet. Known as a ketogenic diet, this
therapy is helping Tristan Carroll stay
seizure-free.
Tristan, the 8-year-old son of Jim
and Christine Carroll of Duvall, was
diagnosed with epilepsy when he
was 2. Over the years, he tried many
medications, but none provided
permanent relief.
A year ago the seizures began
coming faster and faster until Tristan
dropped to the floor with convulsions
50 times in one day. After a trip to Children’s emergency department, his
neurologist, Dr. Russell Saneto, decided
he might be helped by a ketogenic diet
in combination with medication.
Tristan has had only two days with
seizure activity since starting the diet
a year ago. He played baseball this
summer and attended his first sleepover.
“The seizures were preventing him from
doing so many things,” says his mom.
“He’s a lot more independent now.
We’re so grateful to Dr. Saneto and
Children’s Hospital. We have our
boy back.”
Ketogenic diets and medications
don’t cure epilepsy, so doctors track
patients like Tristan closely as they
grow up. Novotny envisions an
expanding role for integrated imaging
in following a child’s progress and
watching for possible side effects from
treatment. Doctors could, for instance,
use different MRI technologies to look
at brain function and brain chemistry
concurrently to see how the chemical
changes that occur with treatment
relate to memory, speech and other
neurological development.
“We’re not doing that yet, but it’s an
example of how integrated imaging can
help us monitor and adjust treatment
to optimize outcomes,” Novotny says.
“In good hands”
Neurosurgeon Dr. Jeff Ojemann.
Daniel Kelley, the son of Jeff and
Brenda Kelley of Bonney Lake, was 6
months old when he was diagnosed
with epilepsy. Medication controlled
his seizures for a while, but they soon
returned – a pattern that was repeated
with every new medication.
Daniel was lucky in one respect.
An MRI indicated the seizures were
originating from a specific location – a lesion on the right side of his brain.
That meant Ojemann could perform
surgery if he could determine the
precise boundary between the lesion
and surrounding tissue that controls
the movement of Daniel’s hands.
To find a separation between the
lesion and the sensitive tissue, Ojemann
blended data from an EEG with
integrated imaging from a PET scan
and a special type of MRI. Known as an
fMRI, or functional MRI, it is taken while
patients perform tasks such as reading
or tapping their fingers. The results
reveal areas of the brain that must be
avoided during surgery.
Daniel’s surgery left the 3-year-old
free from seizures and his motor skills
intact. “We were nervous,” says Daniel’s
mom, “but we knew we were in good
hands because Dr. Ojemann was so careful and specific about how he
prepared for and performed the surgery.”
Gift aids recruitment
The Alvord, Gerlich and Rhodes Family
Endowed Chair in Pediatric Epilepsy
helped bring Novotny to Children’s.
The endowed chair was established
with a gift from the family of the late
Dr. Buster Alvord (see below).
“We were already known as an excellent
regional referral center for epilepsy,” says
Dr. Sidney Gospe, who leads Children’s
Neurology Department. “We recruited
Rusty to help us become a national
referral center that improves treatment
and contributes new knowledge about
this disease. We couldn’t have attracted
someone of his stature without the
resources this gift provides and the
statement it makes about our
commitment to fighting epilepsy.”
Novotny says Children’s is a great fit,
providing state-of-the-art imaging
systems, a deep pool of information
technology talent and a host of skilled
medical specialists – both at the
hospital and the University of
Washington. Another attraction:
working in a hospital devoted solely to
caring for children in a region with a
growing population.
“There is so much promise here
to build an epilepsy program that
breaks new ground and translates
what we learn into better patient care,”
Novotny says.
Exciting progress
Under Novotny, our epilepsy program
established a fellowship program to
train doctors in this important specialty
and began using telemedicine to
digitally collaborate with community
physicians in distant locations.
We also joined a nationwide study – the Epilepsy Phenome/Genome Project – which seeks to better
understand which genes influence
epilepsy and how. The goals of
the study include finding which
medications work best with which
forms of epilepsy, and identifying
certain forms of epilepsy that disappear
as children grow older – knowledge
that would help avoid needless surgery
and limit duration of medical treatment.
“That’s what makes epilepsy such
an exciting field to be in,” Novotny says.
“What we learn through research can
be directly transferred into improved
patient care.”
Gift Continues the Work of a Pioneer
Nancy Alvord and her late husband, Buster.
The late Ellsworth C. “Buster” Alvord
Jr. was known throughout the world
for his pioneering contributions to
the field of neuropathology. Alvord served as head of neuropathology at
the University of Washington School
of Medicine for 40 years and provided
clinical care at the UW and at Seattle
Children’s. Two of his books on brain
development and neuropathology
are still considered classics, and his
research helped improve the care of
people living with multiple sclerosis.
“Research, teaching and patient
care were equally important to him,”
recalls Dr. Bob Hevner, a researcher
at Seattle Children’s Research
Institute and one of Alvord’s illustrious
protégés. “He enjoyed his work more
than anyone I know and his enthusiasm
and positive attitude spilled over to
everyone he worked with.”
Over the years, the Alvord family
has maintained close ties to Children’s,
raising money, volunteering and
hosting luncheons and meetings.
They also created the Alvord, Gerlich
and Rhodes Family Endowed Chair in
Pediatric Epilepsy.
“Our family knows how much
work there is to do to advance care
for kids with epilepsy,” notes his wife, Nancy Alvord. “We are proud to help
bring talented, visionary leaders to
Children’s. Our endowment is a way
of carrying forward the work that
Buster started.”