The Sturge-Weber Clinic provides specialist expertise in the assessment and management of children with Sturge-Weber Syndrome and associated medical and developmental problems.
The clinic aims to:
Provide information about Sturge-Weber syndrome.
Assess your child’s development including language, cognitive and motor skills and functional vision.
Provide recommendations regarding medical management, therapy and/or learning. Advice regarding medical management may include advice about medication, epilepsy surgery or the need for further investigation.
Monitor your child’s development over time. In some situations, a child’s development can fluctuate.
- Work closely with parents and local services
The clinic’s role is to provide specialist assessment and advice to families and relevant professionals. Your child’s Paediatrician locally remains the co-ordinating specialist for your child’s medical and developmental needs.
The Sturge-Weber Clinic team members will vary depending on the child's need but will generally include a consultant paediatric neurologist, consultant neuropsychologist, specialist registrar, speech and language therapist and occupational therapist.
The team see children with Sturge-Weber Syndrome and associated developmental problems. Children may have difficulties with language, communication, learning, behaviour, movement or vision.
Children are referred either by their local consultant paediatric neurologist, consultant community paediatrician, or by a consultant from Great Ormond Street Hospital (GOSH).
Referrals should be made to the Clinical Co-ordinator at The Wolfson Neurodisability Service at GOSH.
Before the clinic visit, we will send you a questionnaire asking about your main concerns and questions. We will ask you to send this back to the clinic before your appointment. We will also ask you to send in any reports on your child from your local team.
Appointments last approximately three to four hours. The appointment may involve some waiting so please bring a snack. (There is also a café on site which you are welcome to visit).
Please bring your child’s favourite toy so they have something to play with when the team is talking to you.
Local professionals involved with your child are welcome to attend the appointment but please inform the clinic in advance.
There are usually three parts to the clinic visit:
Interview: the team will take a medical and developmental history of the child and discuss any particular concerns.
Assessment: assessment may be formal (language or cognitive tests) or informal (using a range of play materials) depending on your child’s abilities and the questions raised. You are welcome to observe the assessment. After the assessment, the team takes 20 minutes to analyse the assessment as a team.
Feedback: We then meet with you to discuss our findings and recommendations. You will be given a summary of the discussion to take away on the day.
A full report will be sent to you and an agreed circulation list afterwards.
In some cases, further medical investigations will be suggested which may be carried out locally or at GOSH.
Children are regularly reviewed in the Sturge-Weber clinic according to their needs.
We may sometimes have visitors in the clinic. We will check with you that this is acceptable to you.