What You Should Know about Dravet Syndrome
23 Jun 2025
Dravet Syndrome is a rare and severe form of childhood epilepsy that typically begins within the first year of life. Affecting around 1 in every 15,000 to 21,000 births, it has a lifelong impact on children and their families.
Children with Dravet experience frequent, prolonged seizures (over 5 minutes) that are often resistant to medication (anti-epilepsy drugs). Beyond seizures, many face developmental delays, behavioural challenges and an increased risk of sudden unexpected death in epilepsy (SUDEP).
However, with the right treatment and support, children with Dravet Syndrome can thrive!
What Causes Dravet Syndrome?
Most cases of Dravet Syndrome are caused by a mutation in the SCN1A gene, which is responsible for regulating sodium channels in the brain. These sodium channels help control electrical activity in neurons, meaning when the SCN1A gene is mutated, these channels malfunction, increasing the brain’s susceptibility to seizures.
Is Dravet inherited?
Dravet Syndrome is not usually inherited. Most SCN1A mutations occur spontaneously, meaning there is no family history. However, genetic testing is essential to confirm the diagnosis and determine the most appropriate treatment strategy.
When and How Does Dravet Syndrome Start?
Dravet typically begins in the first year of life. The first seizure is often triggered by fever (what is called a febrile seizure) and can last unusually long.
As the child grows, different types of seizures may appear, including:
Myoclonic seizures (brief muscle jerks)
Absence seizures (staring spells)
Focal seizures (seizures that begin in one part of the brain)
Challenges Beyond Seizures
Dravet Syndrome affects far more than seizure activity. It impacts many aspects of a child’s development, such as:
Cognitive and learning delays;
Speech and motor impairments such as ataxia;
Behavioral challenges (such as hyperactivity or autistic traits);
Sleep disturbances;
Vulnerability to infections and injuries;
Dravet doesn’t only affect the child, it affects the entire family. Caregivers often live in a heightened state of alert, managing complex care routines and making difficult safety decisions every day.
Why Early Diagnosis is key in Dravet Syndrome
An early and accurate diagnosis can significantly improve quality of life. Some standard epilepsy medications, like carbamazepine and lamotrigine, can worsen seizures in children with Dravet.
Identifying the syndrome early allows healthcare professionals to:
Avoid standard medications;
Choose a more effective course of treatment;
Provide families with genetic counseling and care coordination;
Connect families to specialized rare epilepsy support networks;
Living With Dravet Syndrome: Tools and Treatments
There is currently no cure for Dravet Syndrome, but early intervention, personalized care plans, and seizure monitoring tools can make a big difference.
Emergency medications ready to use, prescribed by a neurologist
A written and digital Seizure Action Plan (Download Lampsy’s free template here)
Seizure monitoring devices and alert systems. For Dravet families, tools that provide real-time alerts could be life-changing, adding an extra layer of security and peace of mind at home home, empowering you to live your life more safely. Find out how Lampsy can help you here!
The Role of Supportive Therapies in Dravet Syndrome
Supportive therapies can have a profound impact on a child’s development, especially when started early and tailored to their needs:
Speech therapy helps children improve language skills, communication, and sometimes feeding. Many children with Dravet experience speech delays or regressions.
Occupational therapy (OT) focuses on developing fine motor skills, sensory integration, and daily living abilities like dressing, eating or using adaptive tools.
Physical therapy (PT) supports gross motor skills, balance, coordination and mobility, especially important for children with hypotonia, gait issues or delayed milestones.
These therapies are often essential to help children with Dravet Syndrome gain greater independence, confidence and functionality in their daily lives. When combined with seizure management strategies, they contribute significantly to a child’s overall quality of life, helping them thrive!
Families frequently report that these services also offer emotional relief, providing structure, progress markers and a supportive care network for both the child and caregivers.
What to know for a Newly Diagnosed Child with Dravet Syndrome
Receiving a Dravet Syndrome diagnosis can feel overwhelming. You may be facing a flood of new information, emotions, and medical decisions, all while trying to protect your child. Remember, you’re not alone.
Here are a few important steps to consider in the early days:
Take a breath. It’s okay to feel shocked, sad, angry, or all of the above. There is no “right” way to process this.
Build your care team. Seek out a pediatric neurologist who understands rare epilepsies and ask about genetic counseling.
Create a safety plan. Learn seizure first aid (learn here how to respond to a seizure), ask your doctor about emergency medications, and create a Seizure Action Plan (you can download a free one [here]).
Connect with others. Reach out to national Dravet foundations and family networks. Other parents can offer support, tips and understanding.
Start small with smart tools. Begin exploring seizure monitoring options. Simple and reliable devics that provide alerts when seizure activity is detected can help you reduce anxiety and improve safety.
How You Can Help Raise Awareness for Dravet Syndrome
June 23rd is Dravet Awareness Day.
Sharing information, supporting advocacy organizations or donating to research efforts are simple but powerful ways to support this community. You can also follow and amplify the voices of rare epilepsy advocates!
To learn more or connect with local support groups, visit:
Dravet Syndrome may be rare, but its impact is life-altering. Every child and caregiver deserves better tools, deeper understanding, and a strong community. At Lampsy, we’re proud to stand with families facing Dravet and other rare epilepsy syndromes.