Your child is likely to see a number of health professionals including neurologists, physiotherapists and occupational therapists. Appointments can seem daunting and, to get the most out of them, it is a good idea to write a list of questions beforehand. If your child is old enough, make sure they are also included in the discussion. 

Treatment may be provided in specialist centres or by a local team. The consultant will discuss various treatment options with you. There is no one standard treatment for dystonia and it is likely to take a while to find the most effective approach. Treatment may also change if symptoms change and as your child grows. It can be frustrating but dystonia is a long-term condition that needs careful management – and patience.

Between the ages of 16-18, the care for your child will transfer from a paediatric (children’s) team to adult services. To ensure a good transition, you can ask to meet both the paediatric and adult consultants together so that all necessary information about your child is passed on. This also applies to all aspects of transition from children’s to adult services in education and social care.

Some non-specialist healthcare professionals may not have come across dystonia. A guide on dystonia for health and social care professionals is available from our helpline.