Building a Sustainable Care Plan for Adolescents and Adults With Lennox-Gastaut Syndrome: Cynthia Keator, MD

WATCH TIME: 3 minutes

“It's not just seizures. If you don't think about those things in the pediatric adolescent years, then you're setting yourself up for more complications and potentially more failure for your loved one in the adult world."

Lennox-Gastaut syndrome (LGS) is a severe developmental and epileptic encephalopathy that requires lifelong management extending well beyond seizure control. As patients age into adolescence and adulthood, clinicians and caregivers must navigate a range of evolving challenges, including cognitive impairment, mobility limitations, behavioral concerns, and increasing healthcare complexity. Ensuring continuity of care during this transition period has become an increasingly important focus for the LGS community.

At the 2026 LGS Foundation Family & Professional Conference, held in early July, Cynthia Keator, MD, director of neurology at Cook Children's Hospital, participated in a session titled Building Your LGS Care Team and Care Plan. The conference brought together clinicians, researchers, caregivers, and advocates to discuss practical strategies for managing LGS across the lifespan. During the session, Keator and colleagues highlighted key considerations for developing comprehensive care plans that support patients as they transition from pediatric to adult healthcare systems.

In a conversation with NeurologyLive^®, Keator discussed several aspects of transition planning that she believes are often overlooked. She emphasized the importance of preparing families for the eventual transfer to adult care, navigating changes in insurance coverage and provider networks, and recognizing health concerns that extend beyond seizure management. Furthermore, Keator also explained why anticipating mobility-related and other long-term complications earlier in life may help improve outcomes and reduce challenges as patients with LGS enter adulthood.