6 . What will happen to your child during adolescence and adulthood ?

As your child grows up, new challenges will arise.

When reaching the teens, epilepsy seems to become less active. Usually, focal, myoclonic seizures and atypical absences tend to disappear. Nevertheless, clonic seizures persist, occurring mostly during sleep. They can be repetitive, with several seizure episodes per night, and are sometimes preceded by a myoclonic jerk. Their frequency will decrease with time. Status epilepticus are no longer observed or become less frequent. Some patients can even reach a period of complete seizure control. The sensitivity to fever and infections as triggering factors will decrease in about half of the patients (for more details, see Question 9).

A large number of adult Dravet syndrome patients have reduced motor abilities. These motor difficulties consist of unstable gait/ataxia, tremor and clumsiness of fine movements, unsteady walking. Dravet syndrome patients, teenagers and adults, may suffer from a specific gait disturbance called crouch gait. It is characterised by an increased flexion of the hips, knees and ankles making it difficult to walk long distances. Some patients may even need a wheelchair for these situations. Nevertheless, all remain able to walk at home, school or work. The younger the gait disturbance starts the worse it will be when reaching adulthood.

Regarding education, cognitive functions and social outcome, the limited abilities have an important impact on everyday life activities.

These adults are usually partially dependent or live in special institutions. They attend occupational day centres, sheltered workshops or special professional schools.

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