Dravet Syndrome Care

Specialized Epilepsy Care, Advanced Therapies and Family-Centered Support

Caring for a child with Dravet syndrome can feel overwhelming. Seizures may begin early in life, treatments don’t always work as expected and families often face uncertainty day to day.

At Phoenix Children’s, our Epilepsy Program offers comprehensive, specialized care for children with Dravet syndrome – combining expert clinical management, genetic insight and access to emerging therapies, all with a deep commitment to supporting families.

What Is Dravet Syndrome?

Dravet syndrome is a rare and severe form of epilepsy that usually begins in the first year of life. It is most often caused by a genetic change in the SCN1A gene, which affects how brain cells communicate.

Children with Dravet syndrome may experience:

Frequent, hard-to-control seizures
Developmental delays
Learning, movement or behavioral challenges
Greater care needs as children get older

Because Dravet syndrome is genetic, diagnosis and care often require a highly specialized pediatric epilepsy team.

Comprehensive Dravet Syndrome Care

Our team provides coordinated, individualized care designed to meet the needs of each child and family, including:

Advanced epilepsy evaluation and diagnosis
Personalized seizure management plans
Genetic testing and counseling and counseling
A team of specialists who work together—neurologists, pharmacists, care coordinators, and others—so your family has one coordinated plan
Family education and long-term guidance

We focus not only on seizure control, but also on quality of life, development and family support.

Advancing Care Through Research

Phoenix Children’s participates in national research efforts focused on genetic and precision-based therapies for epilepsy, including Dravet syndrome. These investigational studies aim to better understand the condition and explore new treatment approaches that target the underlying genetic cause. For some families, a clinical trial may open a door that other treatments have not.

Participation in research is always voluntary, and we will guide you through the risks, benefits and eligibility considerations.

A Team That Understands Dravet Syndrome

Our epilepsy specialists care for children with complex and treatment-resistant epilepsies every day. As one of the largest pediatric epilepsy programs in the region, we offer access to advanced diagnostics, investigational therapies and specialized expertise that may not be available closer to home. Families benefit from:

Expertise in rare genetic epilepsies
Close coordination across specialties
Long-term relationships with a trusted care team
Connection to the Barrow Neurological Institute at Phoenix Children's, a nationally recognized center for neurological care

We partner with families from diagnosis through every stage of childhood and adolescence.

Dravet syndrome is usually caused by a change in a gene called SCN1A, which affects how nerve cells in the brain send electrical signals. It is not caused by anything a parent did or did not do.

Diagnosis is based on a child’s seizure history, development and, often, genetic testing. Because seizures can look different early on, diagnosis may evolve over time as more information becomes available.

Many children with Dravet syndrome have seizures that do not respond well to standard anti-seizure medications. This is why care from a specialized pediatric epilepsy team is important.

While there is currently no cure, treatment focuses on:

Reducing seizure frequency and severity
Minimizing medication side effects
Supporting development and daily functioning

New therapies and research approaches continue to emerge, offering hope for improved outcomes.

Your first visit typically includes a review of your child's seizure history, current medications and any prior test results. From there, our team will talk with you about next steps—whether that means additional evaluation, a change in treatment or learning more about research options.

Some investigational treatments aim to address the underlying genetic cause of Dravet syndrome rather than only managing symptoms. These therapies are still being studied and are available only through carefully monitored clinical trials.

Eligibility depends on age, genetic findings, seizure history and other medical factors. Participation is voluntary, and families receive detailed information before making any decision.

Beyond medical treatment, families receive: