Dravet syndrome is a rare form of epilepsy that starts when an otherwise healthy child is a baby.
Usually, the first sign of Dravet syndrome is a seizure that’s brought on when a baby has a fever. This is called a febrile seizure. Many babies have these and don’t get Dravet syndrome, so this symptom alone doesn’t mean your child will get the condition.
After the first febrile seizure, children who have Dravet syndrome tend to have many seizures. Some may last many minutes, or they have a series of seizures. Some seizures affect only one side of the body.
Babies with Dravet syndrome are more likely to have febrile seizures, but they also have seizures that aren’t necessarily related to a fever. Children with the condition can get a seizure when their body temperature rises -- from a hot bath or a warm summer day -- even when they’re not sick. Bright light, stress, or too much excitement may also trigger one.
If your child has the condition, they likely will develop normally until they’re about 1 or 2 years old. After that, their development may be delayed, meaning they won’t reach milestones on schedule. By age 6, they may begin to progress at a quicker rate again. But they could have lifelong issues.
Because the condition affects each child in a different way, it’s hard to know where on the Dravet syndrome a child will be in terms of delayed development. Some may have trouble with balance and movement, others with speech or behavior.
The condition usually isn’t inherited from parents. Most cases are caused by a mutated gene called SCN1A. About 80% of people with Dravet syndrome have the altered SCN1A gene.
Dravet syndrome can be hard to diagnose, partly because it’s so rare. During an exam, your doctor will ask about your child’s seizure history and other details about their health to find out what the problem might be.
If your doctor thinks your child has the condition, they’ll test to see if the SCN1A gene is mutated. If it is, a diagnosis of Dravet syndrome probably will follow. Even the gene isn’t mutated, your doctor can make a diagnosis based on other symptoms. They might want to get a CT scan, MRI, electroencephalogram (EEG), or blood tests to confirm.
If your child has Dravet syndrome, how your doctor chooses to treat the condition depends on where they fall on the spectrum.
Treatments include ways to better manage seizures, and provide developmental therapy.
The medicines on the market today can’t fully prevent or control all Dravet syndrome seizures, but they may help. Your doctor may prescribe two or more anti-seizure drugs.
Your doctor may prescribe other medicines to help shorten the length of very long seizures. This kind of seizure can become a medical emergency.
Also, a tiny device called a vagus nerve stimulator (VNS) can be implanted under their skin. This can reduce the amount of seizures by 20% to 40%. It sends an electrical impulse to the brain through the vagus nerve in the neck, which helps to control seizure activity.
You can learn what triggers seizures in your child, then work to avoid those triggers. Some parents of children with Dravet syndrome use these methods:
- Dress them in cooling vests on hot days.
- Put sunglasses on them when they will be in very bright light.
- Make changes in their diet. A “ketogenic” diet -- high in fats and low in carbs -- is best.
Always check with your child’s doctor before making any changes.
Physical or occupational therapy is great if your child has delays in speech, movement, social skills, or other developmental areas. It can help them make progress and reach milestones in their day-to-day life.