Identifying Gaps in Lennox-Gastaut Syndrome Care Across the Lifespan

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EP: 1.Identifying Gaps in Lennox-Gastaut Syndrome Care Across the Lifespan

Lennox-Gastaut syndrome (LGS) is a rare epilepsy syndrome that typically begins in childhood and is associated with frequent seizures, cognitive impairment, and long-term disability. Earlier this summer, the LGS Foundation hosted its 3rd biennial LGS Research Meeting of the Minds, held July 21–22, 2025, bringing together caregivers, researchers, health care providers, scientists, advocacy representatives, and industry partners to discuss clinically relevant topics strategies to advance evidence-based LGS care across the lifespan.

In collaboration with LGS Foundation, NeurologyLive^® held a roundtable discussion with 2 pediatric experts who attended and participated in the meeting. Throughout this panel discussion, the duo covered topics like major gaps in LGS care, fostering connections among diverse stakeholders, and shaping strategies to guide future research. The guests featured in this panel included Scott Perry, MD, head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center, and Gita Gupta, MD, MS, assistant professor of pediatrics at the Johns Hopkins University.

In this first episode, clinicians discussed major gaps in current LGS care, including uncertainty around optimal treatment sequencing for seizures and the challenges in transitioning care from pediatric to adult settings. Although multiple approved therapies exist, experts noted that there is no consensus on first-, second-, or third-line choices because of a lack of direct comparative studies. Additionally, the duo highlighted that care needs and resources change significantly as children with LGS age, calling for more structured, seamless integration between pediatric and adult care providers to ensure consistent support for both patients and families.

Transcript edited for clarity. Click here to view more content of the LGS Foundation.

Isabella Ciccone, MPH: From a clinical standpoint, what do you see as the most pressing gaps in current LGS care that were discussed at the meeting?

Scott Perry, MD: I'll say there are a lot of gaps, and I don't think I can hit on all the gaps we discussed during our couple of days. One of the biggest is just really, what is the right treatment from a seizure standpoint, right? Seizures are one of the primary issues we deal with in LGS, and we're lucky that we have approved drugs for the condition, but it's unclear which one is the one you should go with first. What's second line? What's third line? You can look at multiple consensus statements and algorithms, and you'll find that they're all a little bit different. Many of them have lines with multiple drugs across it, like none is better than the other, and it's just because we don't have any direct comparison or really know. So that was one of the things that people were really interested in trying to drill down and understand — for seizure type, for patient characteristic, what is the best medicine for each of the situations? And we had some action items before we left about how we might address that.

Gita Gupta, MS, MS: I would say another big theme that stood out to me was, how do we care for children with LGS across the lifespan? So, when you have younger parents who are taking care of younger children, there's a different type of investment of time and care and energy that you can provide to the younger child. But what happens when the child grows up to be an adult and the caregiver themselves is an older adult? And there's a whole different set of resources available to adult patients compared to pediatric patients. This is the case for any child, let alone a child with complex and chronic medical problems. So, I thought it was amazing that this was a highlight, and that people who have more experience from other fields, like congenital heart disease and cystic fibrosis, were able to share their perspectives, because they've done an amazing job. As you know, I'm a pulmonologist, and we have very seamless integration — or we try to — with our adult pulmonology colleagues for children with cystic fibrosis, for example. We're trying to do a better job for children who are ventilator dependent, and I think LGS is one such condition too, where there's more work to be done to transition the care seamlessly, both for the child and for the family. So, it's nice to hear about that.