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

At your first appointment, ask for advice about Corticosteroids (steroids). These can be prescribed from as young as age 3 or 4.

Ask for advice on physiotherapy, as regular stretching is important;

Ask for advice on night splints, diet and exercise.

If you are interested in learning more about research, and your son participating in a clinical trial, do ask your consultant if the centre you are seen at is currently running trials. Other questions you may want to ask are:

 - the risks and benefits of your child taking Corticosteriods

 - where to be referred for physiotherapy advice and support

 - when should your child be seen by the endocrine team

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

 - orthoses (splints) and where to get your child measured and fitted

 - when to arrange for your child to have flu and pneumonia jabs

 - what the protocols are in obtaining speedy appointments

 - counselling and therapeutic support

 - initial advice on financial support and grants