Lennox-Gastaut syndrome (LGS) presents one of the most complex care challenges in pediatric epilepsy, not only because of its intractable seizures, but because of the wide range of comorbidities and systemic needs that accompany patients across their lifetimes. As treatment advances have extended life expectancy for this population, the question of how to plan for that longer life has grown increasingly urgent. That question took center stage at the 2026 LGS Foundation Family and Professional Conference, held in early July, where clinicians and families gathered to address the practical realities of care across all stages of life.
Epileptologist Cynthia Keator, MD, Director of Neurology at Cook Children’s Hospital, participated in a session titled Building Your LGS Care Team and Care Plan, which she co-led alongside adult epileptologist Fabio Nascimento, MD. The session brought together both pediatric and adult perspectives, and drew significant input from the families themselves, many of whom came with pressing concerns about what happens when their child ages out of pediatric care.
The goal of the workshop was to look at the three phases of growing up with LGS. Depending on when the patient develops it, the majority of pediatric patients will develop it prior to age eight, but with the new criteria and the new definition in 2022, it is now 18 and younger. There are really three groups: the pediatric group, which goes until about age 12, the adolescent and teenage group from about 12 to 18, and then the adult group, 18 and older.
Keator says the goal was identifying who are the people on that care team and who takes the lead on that role. From a pediatric perspective, where does the pediatric epileptologist fit in? And for Nascimento, how does it change when you move into the adult world? One of the things he emphasized is that the American Academy of Neurology many years ago came out with guidelines on when you should start discussing transition care, and it should be as early as 14, and some will argue as early as age 12. It is very difficult because of how healthcare is in the United States with different insurance companies and who covers what, so you really should start thinking about that early on.
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The session ended up going in a very parent-driven direction, which was about how families can become the person to help guide this transition to adult care, because it is very overwhelming and there is a lot of challenges and a lot of fear in how you do it. And very few adult epilepsy providers feel very comfortable with Lennox-Gastaut and other developmental epileptic encephalopathies. So that was kind of the common theme of what we can do better.
Centralizing records and addressing gaps
My take-home message, and what I do at my institution, is I have a kind of flow sheet or care plan, which starts with the neurology. When did everything start? What medications have you been on? What have your prior studies looked like, for MRIs, genetic testing, etc.? And then going into every single system: have you seen pulmonary? Have you seen cardiology? Do you need to see those?
And sometimes you don't, but making sure you're thinking about those things and putting it all into their categories, so that when you do move on to adult care, you have it all in one place and it's succinct. It's only two or three pages, but it's all there. One of the big things we talked about is that families get very frustrated because when they transfer to adult neurology, they're often told that their records didn't come through, and getting records is very difficult.
Keator says that families often struggle to keep track of the complex medication histories associated with Lennox-Gastaut, noting that patients are frequently on multiple drugs that are swapped in and out over time. The CARES Act passed several years ago allows for the immediate release of medical information, which helps centralize this data. Taking that information and saying it's not just LGS, what about all the other different chronic neurological conditions, or pulmonary conditions, or cardiac conditions? You can centralize all your information, and with the cloud, you can store it in a way that makes it user-friendly for wherever you go, so that a physician can pull that information and get that answer.
The practical reality of the healthcare system creates friction points that can derail care. Keator notes that a family might identify a provider when the child is 16 or 17, only to find that provider no longer accepts their insurance plan by the time the patient is ready to transfer at age 20 or 21. This disconnect highlights the difficulty of handling the healthcare setting for patients with complex needs.
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Beyond seizures in adulthood
The second thing I think gets lost is that it's not just seizures. I think we often focus so much on just one thing. From a pediatric perspective, I focus a lot on mobility, because a lot of these children have gross motor function scores usually in the three to five range. One being you walk around with no problem. Two being you need some sort of assistive device from time to time but still ambulate on your own. Three, you really need a device to walk around with like a gait trainer. Four, you can stand and you can use the gait trainer, but you prefer to be in a wheelchair most of the time. And five being completely wheelchair bound.
Those patients have a much higher risk for hip dysplasia, and a lot of those children are nonverbal. From a pediatrics perspective, we focus on some of those other organ systems more comprehensively. But in the adult world, it really becomes very specialty-focused. I'm a specialist, I only focus on seizures. And so now you've got to find all these different people. If you don't think about those things in the pediatric and adolescent years, you're setting yourself up for more complications and potentially more failure for your loved one in the adult world, because they're going to end up having adult problems that we often could have picked up in the pediatric area.
Keator envisions the future of care evolving through centralized natural history databases. When you follow just the natural history, you're able to do one of two things. The first is you start to cohort groups. The very unique thing about LGS is that there are thousands of reasons why a patient develops it. Dravet, we know it's SCN1A. TSC, kind of the same thing. But LGS can be due to genetic causes, acquired causes, metabolic causes, and then of course there's the 40% that are unknown, which are still probably genetic, but we don't know which gene yet.
One of the things I hope for in the evolution of the future is that you start to cohort these groups and say, this is the group that has these etiologies at this time point, and you start to see these features that occur with LGS. And then you can start to piece them out and understand what are the unique features about them, and can you build better prediction models of how these things happen? The second thing would be from a research perspective: once you look at those groups and you have those prediction models, comparing them to patients who do not have LGS, some that will never develop epilepsy, and some that will develop epilepsy but not LGS. What is different about them?