The Developmental Epilepsy Clinic at Great Ormond Street Hospital (GOSH) provides specialist expertise in the assessment and management of children with epilepsy and associated developmental disorders.
The clinic is led by a multidisciplinary team, which provides specialist assessment and management of the interaction between complex epilepsy and development. We are part of the Neurodisability Service and also work closely with the Epilepsy Service. We carry out developmental assessments that show the child’s level of abilities and explore any behavioural issues. This information is then used to make diagnoses, direct medical and surgical interventions, and to guide education, therapy and behaviour management.
Who we see
We see children up to the age of 16 years, who have epilepsy and associated developmental problems. We particularly focus on:
- Landau-Kleffner syndrome (acquired epileptic aphasia) and other epilepsies where there may be difficulties with language, social communication, learning, behaviour or movement.
- Monitoring of development for specific epilepsy treatments.
- Evaluation of development as a baseline for decisions about epilepsy surgery.
- Children who are difficult to assess because of behaviour, sensory impairment or unusual developmental profiles.
Children are usually referred by their local paediatric neurologist, their consultant community paediatrician, or by a consultant from GOSH.
GP referrals are not appropriate for this clinic.
You may find it helpful to make a note of your main concerns or questions before the appointment, and bring this with you. Local professionals involved with your child are very welcome to attend the appointment, but we would be grateful if you could inform the clinic secretary if you arrange this.
Appointments last approximately two hours and there are usually three parts to the session – an interview, a developmental assessment and a feedback session.
Parents often find it helpful to make a note of their main concerns or questions before the appointment. Local professionals involved with the child are very welcome to attend the appointment.
There are usually three parts to the visit:
- Interview: during the interview, the team will talk to parents about the medical and developmental history of the child and discuss any particular concerns they may have.
- Assessment: the developmental assessment may include a cognitive assessment, carried out by the clinical psychologist, which consists of various puzzles and problem-solving tasks, and a language assessment carried out by the speech and language therapist, which consists of a range of tests to look at the child’s understanding and use of language and/or other communication methods. There may also be an assessment of motor skills by the occupational therapist. The length and complexity of these assessments will depend on the individual child. If there are concerns about behaviour, these may also be discussed with parents in more detail.
- Feedback: the feedback session is the final part of the process. After the assessment, the team will meet to discuss the findings of the assessments and put all the information together. This is followed by a discussion with the family about the assessment results and recommendations. Families will be provided with a preliminary report summarising the main findings to take home with them on the day.
After the appointment, a full report of the assessment, discussion and recommendations will be sent to the child’s parents, the person who referred the child (eg local consultant paediatrician) and the GP, as well as any additional professionals that parents would like to receive a copy.
Team members vary depending on the child’s need, but will generally include a paediatric neurologist, speech and language therapist and clinical psychologist. An occupational therapist is also available.