Reviewed by: Dave Clarke, MD, & Steve Roach, MD
Written by: Abbi Havens
Epilepsy is a complex neurological disorder. In fact, epilepsy is not a single condition. It is a collection of different “epilepsies” which share a common trait: the tendency to have seizures that begin in the brain. Treating such a multifaceted and diverse condition takes a team of experts, innovators, and caregivers to help children not only cope with epilepsy but live and thrive. UT Health Austin is proud to partner with Dell Children’s Medical Center to establish the Comprehensive Pediatric Epilepsy Program.
This highly specialized level 4 epilepsy center provides the most complex forms of intensive neurodiagnostic monitoring as well as extensive neuropsychological, psychosocial treatment and complete evaluation for epilepsy surgery. By building bridges with The University of Texas at Austin and the community, the team is able to put an emphasis on communication, high-quality care, research and patient-centered outcomes. This is enhanced by generous research support from the Mulva Clinic for the Neurosciences.
The care team consists of more than 20 experts, including epileptologists, neurosurgeons, nurse practitioners, ketogenic diet specialists, neuropsychologists, neuroscientists, neuroradiologists, and more. Each brings their own perspective and specialization to the program to ensure children receive holistic care to treat every aspect of their condition and vastly improve their quality of life. We had the opportunity to speak with several of these experts to learn more about the work this groundbreaking program has accomplished and where it will go in the future.
Dave Clarke, M.D., epileptologist, and director of the Comprehensive Pediatric Epilepsy Program, keeps the engine running. Among his many duties, Dr. Clarke educates, advocates, manages, and conducts clinical research to further the treatment of children with epilepsy. He places an emphasis on communication between his team of specialists, referring physicians and families to ensure a complete picture of health and care is being delivered.
Karen Skjei, M.D., director of clinical neurophysiology services and associate chief of epilepsy, works alongside Dr. Clarke to keep advancing the program towards the cutting edge of medicine.
Winson Ho, M.D., pediatric neurosurgeon, has a specific interest in the treatment of pediatric brain tumors and epilepsy. Dr. Ho provides surgical interventions for children with epilepsy to control seizures when medication, diet, or other therapies have been ineffective.
Nancy Nussbaum, Ph.D., pediatric neuropsychologist, focuses specifically on the neurological profiles of different subtypes of epilepsy and studies functional MRI to understand a child’s epilepsy to help with presurgical evaluations.
Janet Wilson, PNP, advanced pediatric nurse practitioner, specializes in children with epilepsy being treated with the ketogenic diet. “We have one of the largest ketogenic diet programs in the nation. Our team was trained by world-class experts in the keto diet. At the heart of our program, we have two dieticians who, combined, have over 25 years of experience treating patients with the keto diet, and that’s pretty much unheard of. We work together to be sure we choose the best diet for that patient and that family,” says Wilson.
Sally Monahan, DNP, CPNP-PC, advanced practice nurse in the division of neurology, applies the bio-psycho-social care to the patients and families she works with at Dell Children’s. “We are looking at the entire child to make sure they have the best quality of life. That entails more than just being disease-focused; we’re holistic in our care,” says Dr. Monahan.
Olivia Martino, MSN, BS, RN, CPNP-PC, nurse practitioner in the inpatient monitoring unit, provides top-notch care to make patients feel comfortable during their stay. “I primarily manage the care for the patients while they’re in the epilepsy monitoring unit. I’m doing everything from just talking to families and patients to learn about their history and entering the admission orders to managing their medical care during their hospitalization. I work closely with the attending providers on different methods to induce seizures, then lower the seizure thresholds to capture the data we need during the study to help manage when patients when they do have seizures,” says Martino.
Kristina Julich, M.D., pediatric neurologist, specializes in epilepsy genetics. “We know that in the majority of cases, epilepsy is actually a genetic disorder, and that’s something I’m very interested in. Depending on the type of epilepsy, we are now able to test for certain genes and find a genetic explanation in up to a third of patients with epilepsy,” says Dr. Julich. “In my experience, finding an answer or finding that gene, can really help the patients and families to put a name to what they are experiencing and to know there are others out there with the same thing. In many cases, this information can help us to either choose or avoid a specific therapy.”
A Multidisciplinary Approach
Dr. Nussbaum knows that a multifaceted disorder like epilepsy requires a multidisciplinary approach. “Our multidisciplinary team collaborates exceptionally well. Many programs have multidisciplinary teams, but the way we work together to understand a child’s epilepsy in its fullest form is exceptional,” she says. “This is so important because epilepsy is such a complex disorder that it affects children in terms of their physical health, as well as their educational, academic, emotional and cognitive functioning, family relationships, and more. Because it is so complex, we all have to work together to understand how each child’s epilepsy affects their functioning and how to best help them with managing every aspect of it.”
Dr. Clarke is all about maximizing convenience and outcomes for patients and families. “In my mind, there are two ways to look at medicine,” explains Dr. Clarke. “A child may come into a clinic with epilepsy, a provider tries to figure out what’s going on, and then they send that child to another specialist, and so on. For the patient and their family, that means more time, travel, and worry. But in a multidisciplinary clinic, the key components to treating a child with epilepsy are all right here. It’s like a puzzle, and we have every piece to maximize the benefit to the patient.”
According to Dr. Skjei, the Comprehensive Pediatric Epilepsy Program is a one-stop-shop. “Many of our patients have multiple comorbidities, meaning they have a lot more that goes along with their epilepsy than just seizures, so it’s beneficial to see multiple specialists at the same time. But, it’s a lot more than that,” says Dr. Skjei. “Medicine today is so specialized and sub-specialized that everyone is in their silo, and what multidisciplinary program allows us to do here is broaden our perspective, share ideas, and enhance our care of the patient.”
The Future of The Comprehensive Pediatric Epilepsy Program
According to Dr. Clarke, there’s no limit to what the program can accomplish. “I won’t even say the sky is the limit because that’s not the limit anymore. We will continue to grow and gain every modern technique and device available to make advancements that can revolutionize care and minimize morbidity. We’re just going to continue to push the edges of science and medicine to move forward,” says Dr. Clarke.
For Dr. Skjei, the future of the clinic will be even more accessible. “One of the projects we’re working on is developing a Spanish clinic so the entire patient experience will be in Spanish, no interpreters needed. That includes everything from the letter patients receive telling them where to park, to their lab results, and everything in between. We’re doing this to try to improve access. We want to remove potential obstacles to facilitate care and improve utilization for Spanish speakers in our region. There is currently nothing like this in the country,” explains Dr. Skjei.
Wilson predicts we can expect growth, growth, and more growth in the future. “We’re growing to the point that we’re nearly bursting at the seams, and that’s a wonderful thing,” says Wilson. “That just means that we have more and more experts in the field, constantly discovering new ways to serve our children and give them the best care possible.”
Treating a condition as complicated as epilepsy isn’t easy. But it’s the real people who comprise the team and their skill, passion, and kindness that make this work possible. UT Health Austin and Dell Children’s Medical Center are proud to be a part of it.