The Aging LGS Patient: Reassessing Diagnosis, Treatment, and Outcomes

Developmental and epileptic encephalopathies (DEEs) are a group of rare epilepsies characterized by seizures and neurodevelopmental regression or delay, often presenting in infancy and frequently resistant to conventional antiseizure medications (ASMs). Even when seizure control improves, neurodevelopmental impairments may persist or progress, necessitating long-term multidisciplinary care and active involvement from families in care coordination. Transition from pediatric to adult care may require individualized planning that addresses both seizure management and broader medical, cognitive, educational, and psychosocial needs of patients with DEEs.¹

In this NeurologyLive® Special Report video program, Joseph Sullivan, MD, the director of the Pediatric Epilepsy Center of Excellence at the University of California San Francisco, discussed key considerations in the transition of care from pediatric to adult epilepsy management. He highlighted strategies to support patients during this process, including effective communication between care teams. Sullivan also addressed the role of genetic testing and the importance of reassessing treatment plans over time. He discussed approaches to optimizing ASMs and the potential use of surgical or neuromodulation interventions. Additionally, he emphasized the importance of reviewing diagnoses and treatments over time to ensure care stays aligned with evolving clinical knowledge.

In this fifth and final episode, Sullivan highlighted how Lennox-Gastaut syndrome (LGS) evolves from early childhood into adulthood and emphasized the role of adult epilepsy providers in continuing care. He stressed the importance of identifying the genetic or etiological basis of LGS to guide precision medicine approaches, rather than relying solely on broad-spectrum anti-seizure medications. Sullivan also discussed the value of revisiting prior treatments, such as valproic acid, to optimize outcomes and improve quality of life for patients, acknowledging that seizure types and their impact can change over time.

REFERENCE
1. Nabbout R. Transition of care in developmental & epileptic encephalopathies (DEE). J Neurol Sci. 2023;455(Suppl):120907. doi:10.1016/j.jns.2023.120907.