What is Dravet Syndrome?
Dravet Syndrome is a rare and severe form of epilepsy that affects 1 in every 15,700 people.1 Dravet Syndrome’s symptoms affect many different systems in the body. Patients can experience a wide variety of comorbidities (multiple, simultaneous disorders), including seizures, cognitive delays, and behavioral challenges. Eighty percent of Dravet Syndrome patients have an SCN1A gene mutation, but not all patients with this mutation develop Dravet Syndrome, and not all patients with Dravet Syndrome have this mutation.1 Dravet Syndrome is usually detected in infancy, and its effects are lifelong.
Children’s Mercy has a cross-disciplinary team of specialists who work together to improve the quality of life for young patients with Dravet Syndrome. Our goal is to make it easier for our patients and their families to access the holistic care they need.
Symptoms and diagnosis of Dravet Syndrome
Early symptoms of Dravet Syndrome include multiple myoclonic seizures (with or without a fever) in normally developing children under 1-year-old, seizures that last longer than 10 minutes, and seizures that resist treatment with antiepileptic drugs after age 2. Other typical early symptoms include developmental delays after age 1, speech delays, and behavioral challenges.1 Children with Dravet Syndrome can have many different types of seizures (myoclonic, hemiclonic, atypical absence, focal and status epilepticus); these seizures persist in adulthood. Dravet Syndrome is also associated with a higher risk for SUDEP (Sudden Unexplained Death in Epilepsy).
People living with Dravet Syndrome typically experience a variety of symptoms outside of epilepsy, including:
- Developmental delays
- Sleep disorders
- Feeding and gastrointestinal challenges
- Movement and gait disturbances
- Behavioral and mental health issues
The specialists at Children’s Mercy can help determine if your child is experiencing Dravet Syndrome, another type of epilepsy, or another disorder associated with an SCN1A gene mutation.
Why multidisciplinary treatment is important
Although there is not yet a cure for Dravet Syndrome, there are many options available to treat its symptoms. Because patients with Dravet’s Syndrome deal with multiple challenges, it is important that treatment addresses the full range of issues impacting the patient—not just seizures.