Dravet syndrome is the most severe form of a group of epilepsy disorders known as Dravet spectrum disorders, and usually appears in infants within their first year of life. During this time, seizures are often associated with a fever and can be prolonged, lasting more than five minutes.

Later, different types of seizures start to occur, such as myoclonus or involuntary muscle spasms.

Currently, there is no cure for Dravet syndrome. Effective treatments options are limited, and seizures are usually resistant to medications.

Physical challenges

Sleeping

Night-time seizures can be a common problem in children with Dravet syndrome, because the electrical activity in the brain changes in a way that can trigger seizures when a child is falling asleep or waking up.

Children with Dravet may also experience difficulty sleeping, awaken too early, and have sleep apnea (repeated breaks, or stops and starts, in breathing during sleep). Besides causing the child to be tired during the day, poor night-time sleep is considered a key trigger for seizures.

Eating

Difficulty eating is a common problem in children with Dravet syndrome. Children may over- or under-eat due to side effects of the medications they are taking. Eating problems may also arise due to a lack of control or as a coping technique. In severe cases, children may need to undergo a surgery known as a gastrostomy to be tube-fed.

Walking

After the age of 10, children with Dravet syndrome often begin to experience problems with gait, or walking. These problems are progressive, continuing as the child ages, and affecting independence as well as movement.

Other conditions, or comorbidities

Dravet syndrome often occurs with comorbidities, or other conditions that occur alongside the primary disease. These may include autism spectrum disorder, attention deficit hyperactivity disorder (ADHD), dysautonomia, low bone density, a curvature of the spine, loss of voluntary muscle coordination, excessive muscle tone, spasticity, and slow growth. Managing these associated conditions can improve patients’ quality of life.

Education

Children with Dravet syndrome can experience developmental delays, with a slowing in development often beginning around age 2. Education and schooling can be affected, although the degree of development delay or difficulties in these patients varies, possibly depending on their seizure frequency.

These children may also miss a number of school days because of their illness. Providing them with extra support can be helpful, such as tutoring or one-on-one aid in the classroom, if available.

Parents should work with their physicians to develop an emergency plan for teachers and nurses. This plan should include steps to follow in case of a seizure at school. Parents should also work with teachers to develop a flexible teaching plan and safe school environment. Teachers of children with Dravet syndrome need to be aware that the child’s behavior and mood may change due to disease treatment and progression.

Lifelong care

Dravet syndrome patients need constant care and supervision that extends throughout adulthood. Few patients with the disease live on their own because of the risk of seizures at any time. Seizures and fever sensitivity become less frequent after childhood, while problems with ataxia and gait are more common in adults.

Seizure control is critical to improving patients’ quality of life. Parents and doctor need work to identify a child’s seizure triggers and do their best to avoid them. Triggers can include stress, temperature changes, excitement, light, loud noises, poor sleep, and repetitive patterns. Reducing exposure to these triggers can help to improve quality of life.

Support networks

Providing constant care and supervision to a child with Dravet syndrome can be draining. Caregivers are encouraged to be patient with themselves and to ask others for help. It can also be helpful to train an extra person to share the care burden in case of emergency, or at night, so caregivers can sleep well. Connecting with other parents of children with Dravet can also help.

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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.