What is Dravet Syndrome?

Dravet Syndrome is a form of epilepsy that is hard to control with medication and which causes people to have seizures their whole life. If your doctor has told you that the child you care for may have Dravet Syndrome it can be very upsetting. 

In this article you will learn about Dravet Syndrome symptoms, what it is and how it is treated. We also look at some of the support that is available.

While a Dravet Syndrome diagnosis can feel overwhelming, there are reasons to be hopeful. We know far more about the condition today than ever before. And new Dravet Syndrome treatments have been released in recent years which can help reduce seizure frequency significantly.

Let's learn more.  

What is Dravet Syndrome?

Dravet Syndrome is a form of epilepsy that begins in the first year of a child's life. It is a rare life-long disease that affects between one in 16,000 and one in 21,000 people and is usually caused by a mutation in a gene called SCN1A. This mutation changes how certain cells in your brain work which makes it more likely you will have seizures.

Important to know:

• Dravet Syndrome can be difficult to control with traditional anti-epilepsy medication
• Seizures are often long and can lead to status epilepticus
• Medication, diet and devices can help control the seizures

Keep learning: What causes epilepsy in children?

Dravet Syndrome symptoms

Common Dravet Syndrome symptoms include:

• Seizures that begin in the first year of life in babies that otherwise appear healthy
• The first seizure often happens when the baby has a temperature (called febrile seizures)
• In the first couple of years, seizures are especially likely to happen when the child experiences a change in body temperature (may be caused by infection, warm weather or a hot bath)
• Seizures are normally long (lasting five minutes or more)
• Many different seizure types occur, but tonic clonic seizures, or jerking in one side of the body are especially common
• As the child gets older, stress and excitement may cause seizures
• The child may develop slower and experience a number of other health issues

Dravet Syndrome treatment

If your child is diagnosed with Dravet Syndrome they will normally receive treatment from a dedicated team of specialists. There are a number of different Dravet Syndrome treatments, including:

• Anti-epilepsy drugs: These may not stop seizures but can reduce their frequency. New treatments including CBD and fenfluramine have been approved in recent years and had impressive results reducing the number of seizures for people with Dravet Syndrome
• Ketogenic diet: This is a diet that is high in fat and low in carbohydrates. It can help reduce the number of seizures that people with Dravet Syndrome have
• Devices: There are certain medical devices which work like a pacemaker that can help reduce the severity and frequency of seizures too

You might find it helpful to use the Epsy app to share information about your child’s seizures to their treatment team. 

Read more: Guide to the main epilepsy treatment options

Support and Dravet Syndrome awareness day

Dravet Syndrome can be very tough on families and carers, as well as the person who is having the seizures. Fortunately, there are several ways that people with Dravet Syndrome and their families can receive additional help:

• Support groups: Ask your treatment team if there are local support groups for families with a child who has Dravet Syndrome 
• Dravet Foundation: The Dravet Syndrome Foundation provides news and support for the community  
• Dravet Syndrome Awareness Day: International Dravet Syndrome Awareness Day happens on June 23rd to promote better understanding of the condition

We are always learning more  

Learning that your child has a rare condition like Dravet Syndrome can be very difficult - it is a lifelong illness and your child will need continual support. But, as we learn more about the disease and improved Dravet Syndrome treatment methods emerge, there is reason to hope that the outlook will continue to improve.