Dravet Syndrome: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Dravet Syndrome?
A pediatric neurologist, a children's brain and nerve doctor, usually treats Dravet syndrome. An epileptologist, a doctor who specializes in seizures, may help too. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is Dravet syndrome?
Dravet syndrome is an epilepsy condition that begins in infancy or early childhood. Dravet syndrome belongs to a group of severe epilepsies. Their seizures often do not respond to medicine. They also bring significant delays in development. It is a lifelong condition.
Symptoms
Seizures usually start in infancy, typically between 6 and 12 months of age. Most children have tonic-clonic seizures. These start with a sudden loss of consciousness. Then the body stiffens, and jerking movements happen all over the body. Other children have seizures that cause jerking on one half of the body. Fevers often come with the seizures.
Status epilepticus, a seizure that keeps going without stopping, may happen often, mostly before age five. After age one, fever, excitement, stress, and flashing lights are the main triggers. Other problems can appear during childhood:
- Developmental delay and intellectual disability.
- Autism spectrum disorder and behavior problems.
- Movement and balance problems.
- Trouble sleeping, and growth and nutrition problems.
- Problems with the autonomic nervous system, which controls involuntary body functions such as breathing, heartbeat, and blood pressure.
Causes and who gets it
Dravet syndrome is a genetic condition. Most people with it have a de novo change in the SCN1A gene. De novo means new. The change was not inherited and happened on its own. This gene is involved in making sodium channels, which play a key role in a brain cell's ability to create and send electrical signals. A change in the gene can upset electrical activity and cause seizures.
In rare cases, the change is passed down from a parent. That parent may be mildly affected. A few other genes can cause similar symptoms.
How doctors diagnose it
A doctor does a physical exam and reviews the symptoms and medical history. The doctor may suggest an EEG (electroencephalogram) and an MRI (magnetic resonance imaging). Results of both tests are often normal when seizures first appear.
If Dravet syndrome is suspected, a genetic test can look for a change in the SCN1A gene. If none is found, a doctor may still diagnose it from the symptoms. A genetic counselor can explain what the results could mean.
Treatment
Treatments can help manage symptoms. The main goal is to reduce or stop seizures. This helps prevent life-threatening problems such as status epilepticus and SUDEP, which stands for sudden unexpected death in epilepsy.
Medicines used include valproic acid, clobazam, topiramate, and stiripentol. The FDA has also approved fenfluramine and cannabidiol for seizures in people with Dravet syndrome. Some seizure medicines may make seizures worse in people with Dravet syndrome. These include oxcarbazepine, carbamazepine, phenytoin, and lamotrigine.
The ketogenic diet, which is high in fats and low in carbohydrates, can also be effective in people with Dravet syndrome. Physical, occupational, and speech therapy may help with overall symptoms and quality of life. Families and healthcare providers should look out for changes in posture and gait that may develop in late childhood. Physical therapy can help with gait and walking problems.
When to see a doctor
A seizure that keeps going without stopping, called status epilepticus, needs emergency medical care. Call 911 or go to the emergency room if a seizure lasts longer than 5 minutes, if another seizure follows soon after the first one, or if your child has trouble breathing or waking up after a seizure. Also call if your child is injured during a seizure or has a seizure in water.
Getting a diagnosis early can help children with Dravet syndrome get the care and support they need, so ask a doctor about any seizures in a baby or child. Tell the care team if you notice changes in posture or gait.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either kind of doctor can help coordinate care between specialists and follow your child's overall health over time.
Common questions
Is Dravet syndrome inherited?
Usually not. Most people with Dravet syndrome have a new change in the SCN1A gene that was not inherited. In rare cases, it is passed down from a parent.
Is Dravet syndrome a lifelong condition?
Yes. Dravet syndrome is a lifelong condition, but treatments can help manage symptoms. The main goal is to reduce or stop seizures.
Is Dravet syndrome life threatening?
It can be. Status epilepticus and SUDEP are life-threatening problems linked to it. This is why the main goal of treatment is to reduce or stop seizures.
What triggers seizures in Dravet syndrome?
Fever is a common trigger. In children older than one year, excitement, stress, and flashing lights are also main triggers.
Sources
- NINDS - Dravet Syndrome
- NCBI PubMed Central - Dravet Syndrome: An Overview
- CDC - First Aid for Seizures
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
