Your first appointment with the neuromuscular team can be an emotional trip. Go prepared, and write down the questions you want to ask.

The team will consist of several people who will all work together to monitor your child's development and general physical well-being. It will include a neurologist, a physiotherapist, as well as other specialist doctors and healthcare professionals. 

At your first appointment, ask for advice on the following key areas:

 - The risks and benefits of corticosteroids (steroids)

 - Physiotherapy, as regular stretching is important 

 - Diet and exercise 

Other questions you may want to ask are:

 - when should your child be seen by the endocrine team

 - how regularly will their heart be checked – this should initially be when diagnosed, then every year (depending on age of diagnosis) followed by annual checks at the age of ten based on heart test results

 - what counselling and therapeutic support is available

 - initial advice on financial support and grants

If you are interested in learning more about research, and would like your child to participate in a clinical trial, do ask your consultant if the centre you are seen at is currently running trials.