Dravet clinic

Children with (suspected) Dravet syndrome can visit Kempenhaeghe at the special Dravet clinic. Within our center of expertise for difficult-to-treat epilepsy, there is a wealth of knowledge and expertise in the treatment of this syndrome.

Children from six to eight months old up to eighteen years are seen at the clinic together with their parents by specialists such as a pediatric neurologist, neuropsychologist, physiotherapist, speech therapist, social worker, and nurse specialist. From experience, we know that our team approach provides added value for both the child and the parents during the long and intensive care process. Special attention is also given to the resilience and capacity of the parents.

By combining the collective expertise of our specialists, we form a comprehensive picture of the child's neurological and overall functioning in various areas, such as motor skills, language, cognition, and behavior. We then develop an integrated treatment plan.

To reduce the enormous impact on children with Dravet syndrome and their parents, we see the child annually in an outpatient carousel at our multidisciplinary clinic. On one morning, the patient meets with all specialists, including the pediatric neurologist, neuropsychologist, physiotherapist, speech therapist, social worker, and nurse specialist. Additionally, at key ages, clinical admissions at Kempenhaeghe take place. During these admissions, multidisciplinary investigations are repeated and we perform a 24-hour video-EEG.

We are currently working on a specific transition clinic for adolescents with Dravet syndrome and a follow-up clinic for adulthood, ensuring that care is well-organized from infancy to adulthood.

Referrals to the Dravet clinic at Kempenhaeghe are possible from any hospital. Pediatricians, youth doctors, and pediatric neurologists can refer a child with (suspected) Dravet syndrome. The results of our investigation are shared with the referrer by letter.