An evidence based guideline developed between professionals and patients. It should empower those asked to care for such children as well as providing important guidance to children, young people and their families as to what does and does not work. In a chronic condition like this, which is of unknown aetiology and uncertain outcome, it is understandable that families will clutch at straws and take up any possibility that might make a difference. This guideline will help them to make the most of living whilst the enigmatic condition is running its course.