Dravet syndrome -- a rare form of epilepsy -- starts early in a child's life, often in the first year. There's no cure, but treatment can help your child feel better and prevent seizures, the main symptom of the disease.
The main ways to help your child manage their seizures are medicine, diet, a therapy called "vagus nerve stimulation," and avoiding triggers.
Children with Dravet syndrome are more sensitive than other kids to seizure triggers. Your child may need to avoid things like:
- Getting overheated from a hot bath, warm weather, exercise, etc.
- Sudden temperature changes
- Flashing lights
- Stripes and other bold patterns
- Stress or overexcitement
Vaccines can sometimes set off seizures. But it's still important to get vaccines to prevent disease. Ask your doctor if your child should take a fever-reducing medicine before they get a vaccine and for 24 hours afterward to prevent seizures.
Every child with Dravet syndrome is different. You might need to try a few different medicines to find the one that helps your child.
Doctors usually start with certain seizure medicines that generally work well for children with Dravet syndrome:
- Clobazam (Frisium, Onfi, Urbanyl)
- Valproic acid (Depakene, Depakote, Epilim, Epival)
If those don't help your child, your doctor may suggest they next try medication such as:
- Stiripentol (Diacomit)
- Topiramate (Topamax)
The FDA recently approved new drugs for children whose seizures haven't improved with other medicines:
- Fenfluramine (Fintepla), for children over age 2
- Cannabidiol, or CBD (Epidiolex), which treats seizures but doesn't cause the high of marijuana
Children who have very severe, long-lasting, and life-threatening seizures called "status epilepticus" need to take drugs called "rescue" medications to stop them.
Diazepam (Diastat), lorazepam (Ativan), and midazolam are examples of rescue drugs. They belong to a class of medicines called benzodiazepines. Your doctor may suggest you keep one of these medications on hand in case your child has a severe seizure.
Some drugs can make seizures worse in kids with Dravet syndrome. Your doctor may tell you to avoid medications such as:
- Carbamazepine (Tegretol)
- Fosphenytoin (Cerebyx, Prodilantin)
- Lamotrigine (Lamictal)
- Oxcarbazepine (Trileptal)
- Rufinamide (Banzel)
- Tiagabine (Gabitril)
- Vigabatrin (Sabril)
The ketogenic (keto) diet can help control seizures in some children who haven't improved with medicine. An advantage to this diet over medication is that it doesn't cause side effects.
The keto diet is high in fat and low in carbohydrates. Children who go on this diet get about 90% of their daily calories from fats such as butter and cheese.
On this diet, your child's body burns fat instead of carbs for energy. Burning fat for fuel increases the amount of chemicals called ketones in their body, which may help control seizures.
In studies, the keto diet cut the number of seizures in children with Dravet syndrome by more than 50%. This diet may also improve children's behavior and thinking ability.
If you would like to put your child on the keto diet, check with your pediatric neurologist. It's important that a doctor and a dietitian who have treated Dravet syndrome carefully monitor children who are on this diet.
Vagal Nerve Stimulation
This treatment is another option if medicines haven't reduced your child's seizures. A vagal nerve stimulator is a device placed under the skin in your child's chest. A wire attached to the stimulator sends pulses of energy to their brain every few minutes through the vagus nerve in their neck.
Your child can hold a magnet over the battery to send a signal whenever they feel like a seizure is about to start. Often this will stop the seizure.
Dravet syndrome can affect a child's development, including their ability to think, talk, move, and learn. Your doctor might recommend that your child get a developmental assessment before they start school.
A combination of physical therapy, occupational therapy, and speech therapy can help children with this condition stay on track with their peers.
Physical therapists teach children exercises to improve their strength, movement, and coordination.
Occupational therapists show kids easier ways to do daily tasks, such as buttoning their clothes or picking things up. Speech therapists evaluate and treat problems with speech and language.
It takes a team approach to treat Dravet syndrome. Working with a group of doctors, nurses, therapists, and social workers can help get your child's seizures and other symptoms under better control.