When your child is referred to Alder Hey for dystonia management, an appointment will be given for a detailed assessment by Dr Ram Kumar, consultant paediatric neurologist and the Physiotherapy team.
If DBS therapy is identified as a potential intervention for your child, a joint consultation will occur with Mr Ellenbogen/Ms Burn, Consultant Neurosurgeons and the Clinical Specialist Physiotherapist, to determine if this is the most appropriate intervention for your child.
Other investigations may be required to further inform this decision (e.g. MRI scans, neurophysiological tests etc). At this appointment you will receive all the information you need to help you decide if you want to proceed with DBS surgery, if this is considered the most appropriate intervention
There will be a discussion at this time to ensure that you and your child’s aims and goals of the surgery are realistic. For some children the surgery may help to improve walking, or just make walking easier. For other children it will be for comfort or ease of cares.
Communication with your child’s local team is an essential part of the process. This will include physiotherapists and consultant paediatricians.
If your child is not known to the team at Alder Hey, you can request that your consultant/physiotherapist refers you into the Dystonia service at Alder Hey if you would like your child to be considered for DBS surgery.