CURRENT RESEARCH

AT

THE STURGE WEBER CLINIC

GREAT ORMOND STREET CHILDREN`S HOSPITAL LONDON

1. Multidisciplinary developmental assessment of infants and children with SWS.

2. To provide recommendations for the local team managing the child with SWS.

3. To further the understanding of neurological and developmental problems which children with SWS may experience.

4. To evaluate quality of life issues in children with SWS and their families.

It is recognised that infants and children with SWS may have complex problems including developmental delay, physical disability and visual impairment related to glaucoma and visual field deficit. Many children also have epilepsy, which may lead to an additional fluctuation in function, in addition to episodes of transient weakness of one side of the body.

The SWS Clinic was established at the Wolfson Centre to provide a format for the multidisciplinary evaluation of infants and children with SWS, and to provide recommendations for management to the child's local team. Currently, the Clinic is held once a month with one child being assessed in detail. The team comprises a senior occupational therapist, speech and language therapist, developmental paediatrician and neurologist. The outcome of the assessment, and suggestions for further management are discussed with the family. This also allows the opportunity for discussion of additional issues that are of concern to the family in relation to their child's difficulties and to review the management of epilepsy where appropriate.

The SW Clinic offers a unique opportunity for research in order to improve our understanding of the neurodevelopmental problems experienced by children with SWS and to look at strategies for intervention. Many of the children referred to the clinic have been followed from infancy. As the clinic group becomes older the techniques for evaluating progress change. At an age equivalent ability of five years assessment requires the expertise of a psychologist, as the tests required to assess ability become more complex. At school age, there is also a need for suggestions regarding educational strategies and issues of school placement. These areas fall within the expertise of a psychologist.

The Sturge Weber Foundation (UK) is funding a neuropsychologist to work with the SWS team, evaluating older children, in order to carry out assessment to fulfil the role of liaison with the child's local team, and to carry out research. Professor Vargha-Khadem, head of Developmental Psychology, is supervising the post.