M. Scott Perry, MD

Panelists discuss how the treatment paradigm for Dravet syndrome has dramatically shifted with newer FDA-approved medications (cannabidiol, stiripentol, and fenfluramine) now recommended as first- and second-line therapies alongside traditional options such as valproate and clobazam, emphasizing that these novel mechanisms offer distinct advantages and should be used early rather than as last-resort treatments, with risk evaluation and mitigation strategies (REMS) programs and specialty pharmacies actually improving patient access and monitoring.

Panelists discuss how patients with Dravet syndrome face elevated sudden unexplained death in epilepsy (SUDEP) risk compared with other epilepsy populations, emphasizing the importance of early family education about risk factors such as convulsive seizures and medication adherence, while highlighting that newer therapies show promise in reducing both seizure frequency and SUDEP risk through better seizure control and decreased status epilepticus occurrence.

Panelists discuss how SCN1A genetic testing has enabled earlier diagnosis of Dravet syndrome, though some clinicians still hesitate to order tests due to discomfort with genetics, emphasizing that early genetic confirmation is crucial for avoiding contraindicated sodium channel medications, implementing appropriate treatments, and providing families with answers and community connections that improve long-term outcomes.

Panelists discuss how early recognition of Dravet syndrome's key clinical features—including prolonged seizures triggered by fever or illness in the first year of life, the importance of genetic testing for SCN1A variants, and the progressive nature of the condition that evolves from initial febrile seizures to multiple seizure types alongside developmental delays—can support timely diagnosis and improve long-term outcomes for pediatric patients.

M. Scott Perry, MD, an expert in epileptic disorders and board president of PERC, provided insights on the group's mission and goals, its structure and membership, and its 60+ ongoing research projects.

Scott Perry, MD, discusses how effective management of Dravet syndrome requires a multidisciplinary approach, emphasizing the critical importance of early diagnosis and aggressive treatment aimed at achieving seizure freedom, which can significantly improve long-term outcomes and quality of life for patients.

Scott Perry, MD, discusses how caregivers of patients with Dravet syndrome face significant challenges and emphasizes the importance of health care providers navigating sensitive conversations with empathy, clear communication, and comprehensive support to address caregivers’ concerns and needs.

Scott Perry, MD, discusses how treatment challenges in Dravet syndrome necessitate careful monitoring by health care providers, who must consider factors such as individual patient response, adverse effect profiles, drug interactions, and the potential need for escalation therapy, to optimize seizure control and overall patient outcomes.

The panelist discusses how the goal of Dravet syndrome treatment is to reduce seizure frequency and severity, typically starting with initial treatments like valproate and clobazam and potentially escalating to combination therapies including options such as cannabidiol, with the overall aim of improving patients’ quality of life and developmental outcomes

Scott Perry, MD, discusses how pediatric patients with Dravet syndrome often experience various comorbidities alongside seizures, including developmental delays, behavioral issues, and sleep disturbances, which significantly impact quality of life, especially when diagnosis is delayed, necessitating comprehensive management strategies.

Scott Perry, MD, discusses how Dravet syndrome is diagnosed through a combination of clinical observation, genetic testing, and phenotypic evaluation, emphasizing the challenges and importance of early diagnosis to improve patient outcomes.

Scott Perry, MD, discusses how Dravet syndrome is a rare genetic epilepsy characterized by frequent, prolonged seizures beginning in infancy, often accompanied by developmental delays and other health issues that persist and evolve as patients age.

The head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center detailed some of consequences of undiagnosed or misdiagnosed LGS, and how it may impact long-term care for eligible patients. [WATCH TIME: 4 minutes]

The head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center discussed the complex nature of Lennox-Gastaut syndrome and where improvements could be made in diagnosing patients. [WATCH TIME: 4 minutes]

At the 2022 AES Conference, the head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center, talked about epilepsy surgery as an alternative for some patients. [WATCH TIME: 5 minutes]

The head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center spoke about his experience in a debate on surgery in genetic disorders at the 2022 AES Conference. [WATCH TIME: 3 minutes]

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how advocacy organizations can help guide patients with epilepsy and their caregivers with a seizure action plan.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how seizure action plans change from pediatrics to adults and the need for adjustments.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details the way seizure action plans can differ depending on seizure phenotype and frequency of seizures.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, covers the staggeringly low percentage of adults with epilepsy who have seizure action plans.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, covers the logistics behind a seizure action plan and why its necessary to develop one.

The co-director of the Jane and John Justin Neurosciences Center at Cook Children’s Hospital discussed his experience with Zogenix’s investigational Dravet syndrome treatment in clinical trials and in the Expanded Access Program.

The co-director of the Jane and John Justin Neurosciences Center at Cook Children’s Hospital discussed the real-world data collected from the Expanded Access Program for fenfluramine (Fintepla; Zogenix) in patients with Dravet syndrome.