Insights From the Child Neurology Foundation: Enhancing Pediatric Epilepsy Care Through Holistic Collaboration

Allyson Eyermann

(Credit: Child Neurology Foundation)

Patients with epilepsy may occasionally display harmful or disruptive behaviors, particularly when communication or language impairments are present. At the 2024 American Epilepsy Society Annual Meeting, held December 6-10, in Los Angeles, California, a symposium titled “Harmful and Disruptive Behavior in Epilepsy” delved into these challenges. The session offered a thorough examination of both patient and caregiver experiences, focusing on assessment, treatment options, and management strategies. It emphasized compassionate care and practical solutions, connecting clinical knowledge with everyday applications.

The symposium aimed to provide clinicians with effective tools to address these behaviors. Key objectives included identifying problematic behaviors, exploring pharmacologic and non-medication treatments, and managing complex situations with empathy. The program began with patient and caregiver perspectives, followed by expert discussions on behavior assessment and treatment strategies. Interactive case studies and practical scenarios were presented by a collaborative team, and the session concluded with a panel discussion to reinforce key points and encourage audience participation.

Jessica Nickrand, PhD

(Credit: Child Neurology Foundation)

To dive deeper into these discussions, leaders from the Child Neurology Foundation (CNF) provided further insights on the importance of a holistic approach in epilepsy care. In an interview with NeurologyLive^® at AES 2024, Jessica Nickrand, PhD, director of programs at CNF, and Allyson Eyermann, deputy director at CNF, emphasized the need for integrating mental health professionals into epilepsy care teams, ensuring that breakthroughs in genetic research lead to accessible and practical solutions. The duo also underscored the need for expanding caregiver education and support to address evolving challenges.

NeurologyLive: From the Child Neurology Foundation's perspective, what excites you about AES? Could you talk a little about some of the promising developments on the horizon?

Allyson Eyermann: It's really exciting to be at AES. AES has always been a highlight for CNF because it brings together multidisciplinary professionals to focus on a single disease topic that affects so many people, both adults and children. It’s amazing to see that collaboration. Hearing about the ongoing research, exciting innovations in disease-modifying therapies, genetic work, and bench research is inspiring. What’s equally exciting is the more holistic approach being integrated into these conversations. There's growing recognition that the care of any patient also depends on the support system around them. The emphasis on family-centered care, mental health discussions, and holistic approaches is truly transformative.

Jessica Nickrand, PhD: One of the most exciting things we were thrilled to be a part of this year was the AES opening symposium, hosted by the Child Neurology Foundation, on managing harmful and disruptive behaviors in epilepsy. While the focus was on the pediatric community, it was wonderful to see so many adult epileptologists in the audience engaging with us afterward. This underscores what Allyson said—the real need for a holistic approach to treating patients and improving their quality of life. Advances in disease-modifying therapies and clinical research mean more children with epilepsy are transitioning into adulthood with epilepsy. Child neurologists have long understood the importance of holistic care, including caregiver mental health. It’s time for all of us to embrace this approach to improve outcomes and quality of life.

How has the pediatric epilepsy/neurology community evolved? Can you talk about what it means to be part of this community and the collaboration you've seen at AES and in the broader epilepsy community?

Allyson Eyermann: Absolutely. That’s one of our favorite parts about being here—getting all the voices at the table. Geneticists are now bringing their groundbreaking research, and we’re seeing more mental health professionals joining the conversation. At the Child Neurology Foundation, collaboration is a core part of our mission. We believe that real, holistic solutions require diverse voices and expertise. It’s exciting to hear different perspectives and see innovations emerge just from sitting at a roundtable and exchanging ideas. Events like AES are an incredible way to wrap up the year, reflect on the progress made, and get energized for what’s to come.

Jessica Nickrand, PhD: I’ll add that in the epilepsy space, specifically, it feels like a new gene is discovered every day, and with that, a new patient advocacy organization emerges. It’s amazing to see clinicians, researchers, and advocacy groups coming together at AES to improve the quality of life not only for patients with epilepsy but also for caregivers and clinicians. This spirit of collaboration is what makes conferences like AES so impactful.

How has detection and care for neurodevelopmental disorders in children improved? Can you discuss some advances we’ve seen and areas where we still need to focus?

Allyson Eyermann: This is a perfect example of how approaching an issue from different modalities drives impact. A lot of progress has been made in neurodevelopmental disabilities, particularly through early diagnostics. Many of these conditions manifest very early, and education plays a big role. Organizations like ours help spread awareness to the general public, those on the diagnostic journey, and clinicians from various specialties. The rapid innovation in genetics is also worth highlighting—it’s evolving so quickly that no one person can know everything. Conferences like AES allow for that essential sharing of information and collaboration, which is the only way to find real solutions.

What’s on the horizon for the Child Neurology Foundation in 2025? Could you give an overview of your goals and plans for next year?

Allyson Eyermann: Of course. At the Child Neurology Foundation, we focus on three pillars. The first is care advancement, which includes supporting research, quality improvement, and advocacy. The second is education—not just for physicians and clinicians but also for families, caregivers, and even siblings. We launched a new learning management system on our website in June, and we’re excited to expand those resources next year.

The third pillar is direct support, which is close to my heart. Peer support is incredibly valuable for caregivers and families. Our Neurology Social Services Network (NSSN) now includes 90 organizations, allowing us to pool resources and provide high-quality information and support to families wherever they are on their journey.

Jessica Nickrand, PhD: At CNF, we care for those who care for children with neurologic conditions—caregivers, clinicians, geneticists—everyone. While we’re often seen as a patient advocacy organization, our programs are rooted in collaboration. For example, we’re excited to continue quality improvement grants in 2025 to support institutions driving innovative work in care coordination and transitions. We’re also working to address systemic issues, like helping caregivers navigate insurance denials, because breakthroughs in diagnostics and treatments don’t mean much if patients can’t access them.

Any final thoughts or comments for the neurology community?

Allyson Eyermann: I’d just add that as a specialty, we’re increasingly focused on the interaction between families, patients, and their medical teams. There’s often so much to cover in a short visit, and unmet needs can persist. We want clinicians to know that the Child Neurology Foundation is here to help address those needs and connect families to reliable resources and support.

Transcript edited for clarity. Click here for more AES 2024 coverage.

REFERENCES
1. Chadehumbe M, Carroll M, Lin N, et al. Harmful and Disruptive Behavior in Epilepsy. Presented at: AES 2024; December 6-10; Los Angeles, CA. AES-CNF Symposium.