Children with (suspected) Dravet Syndrome
Children with (suspected) Dravet syndrome come to Kempenhaeghe from the age of six to eight months. Pediatric neurologist Judith Verhoeven states, “On an annual basis, we see a fifth of the Dutch patients at Kempenhaeghe. These are children from around eight months to 18 years old. The pediatric neurologist follows the child over time until they reach adulthood. Different care needs arise in each phase of growing up, which requires tailored guidance at each stage.”
To reduce the immense impact on Dravet children and their parents, children (toddlers, children, and young adults) are periodically seen at Kempenhaeghe in a multidisciplinary clinic, known as the carrousel. On one morning, specialists such as the pediatric neurologist, neuropsychologist, physiotherapist, speech therapist, social worker, and nurse specialist see the child and the parents. These specialists are part of a multidisciplinary team. By combining their expertise, a comprehensive picture of the child’s neurological and overall functioning is formed, covering motor, language, cognitive, and behavioral aspects, as well as the stress on the family system. This results in an integrated treatment plan.
Additionally, every two years, a clinical admission takes place at Kempenhaeghe. Approaching the child in its entirety through a multidisciplinary approach adds value for both the child and the parents during a long and intensive care journey, improving well-being and quality of life. Besides care for the child, extra attention is given to the parents' capacity and resilience.