5 things pediatricians should know about seizures

Seizures can bring up a lot of worries and unknowns, especially when it comes to children.

One percent of the population has epilepsy, which puts the estimated number of children with epilepsy in Orange County alone at about 7,500. It is estimated that one in five people will have a seizure at some point—whether it develops into epilepsy or not—making seizures a more common neurological condition than multiple sclerosis, Parkinson’s and Alzheimer’s disease combined.

There are many common misconceptions about seizures, even within the medical community. Dr. Mary Zupanc, pediatric neurologist and epileptologist and co-medical director of CHOC’s Neuroscience Institute, points to five important points pediatricians should consider when seeing a patient who has had one or more seizures.

Professional headshot of Dr. Mary Zupanc, Pediatric Epileptologist at CHOC Children's, in a while labcoat on a gray background.
Dr. Mary Zupanc, Pediatric Epileptologist at CHOC Children’s
  1. There should be zero tolerance for seizures.

    Seizures are considered epilepsy when a child has had two or more unprovoked seizures—seizures that are not tied to a different underlying condition.

    When epilepsy is diagnosed, treatment should be initiated early. Some families are reluctant to treat their child’s epilepsy, often fearful that antiepileptic medication is worse than epilepsy itself. They worry about the side effects — that it will cause their child to have cognitive impairments and slow them down. However, repeated seizures can translate into progressive injury to the brain, with a decline in cognitive abilities and frequent psychosocial co-morbidities, including anxiety and depression. Furthermore, even if seizures are infrequent, there is a loss of independence for children and adolescents. An example would be an adolescent’s inability to obtain his/her driver’s license.

  2. Epilepsy is progressive.

    “Brain cells that seizure together network together,” Dr. Zupanc says, forming neuronal circuitry that hardwires the brain for continued seizures. Over time, there can be brain cell loss, cognitive decline, and important psychosocial consequences. Furthermore, when seizures continue, there is increased risk among those with epilepsy of sudden, unexpected death or other progressive neurological issues over the subsequent 20-30 years.

  3. Encourage parents to act quickly.

    Recurrent unprovoked seizures is the definition of epilepsy. Epilepsy should be treated and not ignored, for the reasons outlined above. Approximately 60-70% of epilepsy can be completely controlled with antiepileptic medication. Thirty percent of patients with epilepsy have intractable seizures, i.e. a failure to control the seizures with antiepileptic medications. These patients require more comprehensive care, including an evaluation for epilepsy surgery — at a Level IV Epilepsy Center, which is a designated center given only to those centers who provide multidisciplinary care with cutting-edge technology. Some parents fear that epilepsy surgery will cause serious neurological deficits. Most epilepsy surgeries are highly successful without detrimental effects to cognitive or motor functions. With epilepsy surgery, the risk of a severe and permanent injury is under 1%, and the risk of a minor or temporary injury is under 5%. Compared to the risks associated with years of recurrent seizures, the risks of epilepsy surgery are much lower than the risks of continued epilepsy.  

    The effectiveness of epilepsy surgery decreases significantly over time, especially for children who have had epilepsy for seven or more years. In addition, the plasticity of younger brains allows a transfer of functions to other parts of the brain — something adult brains cannot do as readily, Dr. Zupanc says.

    Because of this, she strongly encourages epilepsy surgery early, not waiting until a child is older.

  4. Delay in seizure treatment affects long-term psychological health.

    The psycho-social components of seizures are oftentimes just as important as the physiological ones, says Dr. Zupanc. Depression and anxiety occur in 50- to 60% of children with epilepsy, and there is also a notable increase in suicidal risk.

    These effects are increased when families wait to pursue recommended surgery, she says. Later in life, the surgery may remove the seizures, but the psychological effects are already deeply embedded.

  5. Seizure history should affect your referral choice.

    “It is so important for pediatricians to know that if a child’s epilepsy has not come under complete control after trying two or more antiepileptic medications, he/she should be referred to a higher level of epilepsy care, specifically a Level III-IV Epilepsy Center, as designated by the National Association of Epilepsy Centers,” says Dr. Zupanc. If the child is a young baby, the referral is even more urgent. “If a baby continues to have seizures after just one drug, he/she needs a referral to a Level III-IV epilepsy center immediately.”

    The care plan should include pediatric epilepsy specialists, epilepsy-trained neurosurgeons, state of the art neuroimaging tools, nurse practitioners, pharmacists, dieticians, social workers and neuropsychologists.

    “At CHOC, we treat epilepsy with a multidisciplinary team approach,” says Dr. Zupanc. Additional diagnostic tests are usually necessary to diagnose the appropriate epilepsy syndrome, determine if epilepsy surgery is an option, and/or outline an individualized, optimal treatment plan.

    Furthermore, all of those involved in the child’s care hold a comprehensive epilepsy conference to discuss complex cases and lay out the best possible strategy for achieving a seizure free outcome.

Seizure-free after a rare epilepsy diagnosis

Thanks to the expertise of a CHOC Children’s epileptologist, a 12-year-old boy diagnosed with a rare type of epilepsy is seizure-free and has a bright future ahead – the significance of which is underscored in November, Epilepsy Awareness Month.

Gabriel Lucak had been a healthy, normally developing child until age 3, when he suddenly began experiencing seizures.

CHOC Children's Neuroscience Institute patient Gabriel Lucak poses by the ocean
CHOC Children’s Neuroscience Institute patient Gabriel Lucak

What began as a tonic-clonic seizure in May 2008 rapidly progressed to include myoclonic, atonic, and atypical absence seizures. On his worst days, Gabriel experienced up to 50 seizures a day.

“It was like living out a surreal nightmare,” said his mother, Nicole.

Gabriel was initially diagnosed with myoclonic-astatic epilepsy, also known as Doose syndrome. His seizures were difficult to control, and doctors attempted many different treatments, including eight months on a ketogenic diet. During this time, Gabriel was hospitalized numerous times to modify his medication and control his seizures.

Searching for answers

A low point for the Lucak family came about nine months after the seizures began. While hospitalized for respiratory syncytial virus, Gabriel’s seizures increased significantly. An electroencephalogram (EEG) recorded seizures occurring about once a minute and a slowing brain wave frequency. Magnetic resonance imaging (MRI) revealed decreased brain volume. Gabriel’s health was rapidly deteriorating.

Joe and Nicole desperately began looking elsewhere for help, and in March 2009 found a beacon nearly 1,400 miles away in Dr. Mary Zupanc, a pediatric neurologist and one of the nation’s leading epileptologists, who was then practicing in Wisconsin.

Under Dr. Zupanc’s care, Gabriel was placed on a new treatment program. He stopped following the ketogenic diet and began taking a new antiepileptic medication. He underwent a two-week long-term video EEG monitoring study, which revealed he was experiencing a fifth type of seizure – tonic – during sleep.

CHOC epileptologist Dr. Mary Zupanc holds a model of a human brain..
CHOC Children’s pediatric epileptologist Dr. Mary Zupanc

A new diagnosis

Dr. Zupanc then knew that Gabriel’s epilepsy had evolved into a more severe form called Lennox-Gastaut syndrome (LGS). This rare type of epilepsy is marked by seizures that are difficult to control, and typically persist through adulthood.

In addition, Dr. Zupanc diagnosed Gabriel with cerebral folate deficiency, a rare metabolic condition, following a spinal tap and extensive testing on his cerebral spinal fluid. He immediately began taking a folinic acid supplement and following a strict dairy-free diet.

Under this new treatment plan, Gabriel was seizure-free within two months. A second spinal tap showed a normal level of folate, and another MRI had normal results. The Lucaks were thrilled.

“Gabriel could have suffered severe brain damage, or he might not have survived at all,” Nicole said. “That’s how critical it was for us to have found Dr. Zupanc when we did.”

A bright future

Today, Gabriel is an intelligent, creative and artistic 12-year-old who dreams of being a paramedic when he grows up.

He remains under Dr. Zupanc’s care, traveling from San Diego to the CHOC Children’s Neuroscience Institute and its level 4 epilepsy center for appointments and annual long-term EEG monitoring.

Gabriel is also under the care of Dr. Jose Abdenur, chief of CHOC’s metabolics disorders division. Gabriel, his younger brother, Nolan, and his parents have all participated in several research studies involving genetic testing for both epilepsy and cerebral folate deficiency.

Recently, Gabriel was weaned off the antiepileptic medication and continues to be seizure-free.

“He has the opportunity to live a full life in good health, thanks to an amazing series of events that led to experienced doctors, correct diagnoses and effective treatment,” Nicole said.

Learn more about the CHOC Children’s Neuroscience Institute.

In the Spotlight: Joffre Olaya, M.D.

Dr. Joffre Olaya performs the full range of pediatric neurosurgical procedures, including epilepsy surgery. He joined CHOC Children’s earlier this year after completing pediatric neurosurgery and epilepsy neurosurgery fellowships at Children’s Hospital Los Angeles and Seattle Children’s Hospital, respectively.

 


Dr. Joffre Olaya had his eye on CHOC Children’s long before coming here. During his pediatric neurosurgery training, he became increasingly interested in epilepsy surgery. And he was impressed by what he heard about the CHOC Comprehensive Epilepsy Program, the only children’s hospital program in California to receive the prestigious Level 4 distinction from the National Association of Epilepsy Centers.

But first, Dr. Olaya decided to complete an additional fellowship in epilepsy surgery through the University of Washington at Seattle Children’s Hospital. In March 2014, he joined the CHOC medical staff and performs the full range of pediatric neurosurgical procedures, including the treatment of brain/spine tumors, cerebrovascular lesions, chiari malformations, neural tube defects, craniosynostosis and hydrocephalus, as well as intractable epilepsy.

Dr. Olaya is further developing the CHOC epilepsy surgery program, working closely with the other pediatric subspecialty services, and continuing to foster a multidisciplinary approach for optimal patient care. He is interested in the leading-edge technology that is making pediatric neurosurgical procedures safer and less invasive.

“I am particularly interested in the use of endoscopic techniques for treating hydrocephalus and craniosynostosis, as well as laser ablation for tumors and focal epilepsy,” said Dr. Olaya.

Dr. Olaya’s interest in treating epilepsy was sparked by a landmark article he read during his residency training.

“A randomized controlled trial showed that for patients who failed two medications, surgical treatment of epilepsy resulted in much greater seizure freedom compared to medication alone,” Dr. Olaya said. “I realized that for a select group of epilepsy patients, I could make a huge impact in their lives by offering them surgery.”

Dr. Olaya’s clinical interests encompass other neurological disorders, as well. His research on deep-brain stimulation for treating childhood dystonic cerebral palsy was published in the Journal of Neurosurgery: Pediatrics October 2014. A related study on this topic was recently presented at the Pediatric Neurological Surgery Annual Meeting in Toronto and published in the November 2013 issue of Neurosurgery Focus.

This past April, Dr. Olaya presented his research into the use of resting-state functional connectivity MRI to assess memory lateralization in pediatric epilepsy surgery patients at the American Association of Neurological Surgeons Annual Meeting. He is currently working on a CHOC institutional review board-approved study evaluating the use of helmet therapy for treating plagiocephaly.

Dr. Olaya is a graduate of the University of California at Davis School of Medicine. He completed his neurological surgery residency at Loma Linda University Medical Center. As a resident, he also performed an elective rotation in pediatric neurosurgery at Children’s Hospital Los Angeles. He is an assistant clinical professor in the Department of Neurosurgery at UC Irvine School of Medicine.

Fluent in Spanish, Dr. Olaya has privileges at CHOC and CHOC Children’s at Mission Hospital. He is in practice with Dr. Michael Muhonen and Dr. William Loudon at CHOC Children’s Specialists in Orange.

For more information or to arrange a referral, please contact Dr. Olaya at 714-835-2724.