Genetic Epilepsy program expands with sleep specialist and neuropharmacist

Innovative Care, News and Announcements | January 29, 2021 | cookchildrens

Cook Children's Genetic Epilepsy Program was founded as a collaboration between Neurology (M. Scott Perry, M.D.) and Genetics (Alice Basinger, M.D.) to better serve children with rare epilepsies secondary to genetic etiology. The program helps children with confirmed diagnoses, as well as children whose genetic testing results are unclear (i.e., variants of uncertain significance) and those with negative test results despite a high suspicion for underlying genetic cause. While treating a variety of rare epilepsies, the program currently serves one of the largest cohorts of children with Dravet syndrome in the U.S. Also, it is one of only 18 clinics recognized as a Comprehensive Care Center by the Dravet Syndrome Foundation.

Dravet syndrome occurs in about 1 of 16,000 children and typically presents in the first year of life with seizures, often in the setting of fever. Children experience normal development initially, but often demonstrate stagnation of development after 1 year of age when multiple other seizure types begin to appear. The majority of children with Dravet syndrome have a causative variation in the SCN1a gene, responsible for encoding a sodium channel essential for effective neuronal firing. In addition to seizures, the syndrome presents with a variety of comorbidities, including behavioral, cognitive, orthopedic and sleep issues among others. Over 75% of parents report sleep difficulties in their children with Dravet syndrome, most often difficulties with sleep initiation and transition.1,2 To better serve our patients, Hilary Pearson, M.D., with Cook Children's Sleep Medicine, began seeing patients in the Genetic Epilepsy clinic January 2021. Dr. Pearson provides a comprehensive review of sleep hygiene and quality, while providing necessary diagnostic and therapeutic interventions to improve sleep in children with Dravet. As poor sleep can often be a trigger for worsening seizures, addressing sleep effectively can be immensely important for the well-being of the child. Also, it benefits the quality of life for the patient and their family.

Given the complexity of the conditions evaluated in the Genetic Epilepsy program, many children are on a variety of medications to treat seizures and associated comorbid conditions. As a result, it is essential to carefully evaluate medication regimens to ensure meaningful interactions are identified, which may alter the efficacy of therapy or lead to increased adverse effects. Adrian Turner, Ph.D., a neuropharmacist at Cook Children's, will join the program to provide these essential services. Dr. Turner reviews the medication regimens for each patient evaluated, identifying potential interactions, providing guidance on recommended laboratory monitoring, educating on potential risks/benefits of therapy, and ensuring every child has up to date seizure action plans in place. These services will add to an already robust collection of services available to children in our program.

Clinical services expanding in Amarillo and opening in Lubbock

Cook Children's Neurosciences has provided neurology services to the Texas Panhandle for many years through monthly neurology clinics at our Amarillo location. In response to the growing need for pediatric neurology care in that area, Cook Children's began offering full-time services starting in January. Rolla Shbarou, M.D., completed her training at the American University of Beirut before completing child neurology training at Duke University and epilepsy training at Arkansas Children's. She remained as child neurology faculty at Arkansas Children's for 10 years before returning to American University of Beirut as assistant professor of pediatric neurology. In addition to this expanded general child neurology access, Cook Children's will continue to provide monthly in-person access to subspecialty services for epilepsy and movement disorders.

Beginning February 2021, Cook Children's Neurosciences will offer services in Lubbock, Texas, further expanding our access options for patients in West Texas. The clinic meets on the third Wednesday of each month and is staffed by M. Scott Perry, M.D., and Fernando Acosta Jr., M.D. Dr. Perry provides expertise in epilepsy, particularly epilepsies resistant to drug therapy, surgically treatable epilepsy, or those secondary to genetic etiology. Dr. Acosta provides specialty care for children with movement disorders, disorders of muscle tone (i.e., cerebral palsy) and stroke. The team will see patients inside the Covenant Children's Urgent Care Center (5202 82nd St., Lubbock, TX 79424).

You may refer patients to our Amarillo and Lubbock locations by calling 682-885-2500.

Contributing author

Headshot of M. Scott Perry

M. Scott Perry, MD


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Contact the Jane and John Justin Neuroscience Center at Cook Children's to refer a patient or ask questions: 682-885-2500.

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