Living With Dravet Syndrome

Dravet syndrome is a severe type of epilepsy in which patients may experience a range of cognitive, behavioral, and physical difficulties. The disorder presents challenges such as seizures, problems eating and sleeping, and developmental delays that could affect schooling. Therefore, those with Dravet syndrome need constant care and supervision that extends through adulthood.


Frequent, prolonged, and uncontrollable seizures first appear in early infancy. While developmental delays can begin at about ages 2 or 3, not all children are equal in their abilities when they attend school.

However, with certain adaptations, children with Dravet are able to access an education and enjoy a safe and nurturing school environment.

Teachers who are patient, flexible, and trained in working with children with special needs are best able to cater to the different learning requirements of a child with Dravet syndrome. Extra tutoring support can be helpful to make up for missed classes.

Children with Dravet syndrome may develop other conditions such as autism spectrum disorder and attention deficit-hyperactivity disorder, which can affect their behavior in social environments such as school. By anticipating and recognizing these potential problems, teachers can better plan how to work effectively with children with Dravet syndrome.

School staff should be able to recognize a seizure and have an emergency protocol when seizures occur. Clearly labeled medications can help teachers ensure that a child with Dravet syndrome does not miss a dose.

Because seizures can happen anytime, extra safety precautions are required for a child with Dravet syndrome in school. For example, classroom modifications such as dimmer lights may be necessary to avoid causing a seizure.

Because children with this condition may be prone to wandering, they should wear a medical ID tag at all times with their name, emergency contact information, and condition. A GPS-enabled tracking device can also be helpful.


One of the most common seizure triggers is not getting enough sleep. Since children need more sleep than adults, lack of sleep can affect them more so.

Children with Dravet syndrome have more disrupted sleep than children without the condition. Seizures themselves can disrupt the sleep cycle, and so can some anticonvulsant therapies.

Disrupted sleep can also increase the incidence of seizures, as well as cause attention deficit and learning, emotional, and behavioral difficulties.

Parents and caregivers can help improve health and quality of life for themselves and the patient if they make healthy sleep a priority.

Some tips for getting a good night’s sleep include maintaining a regular bedtime and wake time, keeping the bedroom dark and quiet during sleep times, exercising regularly but not soon before bedtime, and talking to a sleep specialist about strategies and potential treatments to maintain sleep quality.

Seizures, especially at night, can be very dangerous, but several safety precautions can help, including anti-suffocation pillows and seizure monitors that can recognize a seizure is occurring and trip an alarm to call for assistance.

Ketogenic diet

The ketogenic diet is a high-fat, low-carbohydrate, and limited-protein diet developed by physicians in the 1920s to treat epilepsy.

The body uses carbohydrates, proteins, and fats in foods to produce energy. Carbohydrates — in bread, rice, and potatoes, for example — are the body’s primary source of energy as they are rapidly turned into glucose (sugar) and immediately broken down to produce the energy needed for the activity of different organs.

In the absence of glucose — the body’s main source of energy — liver enzymes turn fats into ketone bodies in a process called ketogenesis. Being the only source of energy for the brain other than glucose, ketone bodies can fulfill two-thirds of the brain’s energy requirement.

The exact mechanism by which the ketogenic diet helps reduce seizures in epilepsy and Dravet syndrome is not fully understood. However, scientists have several theories about the protective effects of ketone bodies in the brain. For example, they think ketone bodies may increase the levels of neurotransmitters, or chemicals that transmit signals through the nerve cells, as well as the number of mitochondria, the main energy-producing units of cells.

Adopting a ketogenic diet is a restrictive and demanding lifestyle for the whole family, and should only be followed with a doctor’s advice and guidance. It requires weighing every ingredient and reading all the labels for the exact calculations, which can be overwhelming. For this reason, a dietitian closely monitors the entire course of the diet. The food amounts in a ketogenic diet are customized to each patient based on his or her needs.

Constipation and acidosis (too much acid in bodily fluids) are among the side effects of the ketogenic diet. Patients may also have high cholesterol, slow growth, kidney stones, low blood sugar, and nausea.

This diet should not be used for those who have certain inborn errors of metabolism that could lead to a severe metabolic crisis, such as carnitine deficiency (when not enough of the nutrient carnitine is available to cells). These metabolic diseases should be ruled out before starting the diet.

The ketogenic diet can also be used in combination with anti-epileptic medications to improve seizure control when these medicines are only partly successful.


Last updated: Nov. 22, 2021


Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.