Management of muscle extensibility and joint contractures

  • The key contact for management of joint contractures is your physiotherapist. Ideally input from a local physiotherapist will be backed up by a specialist physiotherapist about every 4 months. Stretching should be performed at least 4-6 times each week and should become part of the daily routine.
  • Effective stretching to counteract development of contractures may require different techniques which your physiotherapist will show you, including stretching, splinting and standing devices.
  • Regular stretching at the ankle, knee, and hip is important. Later on, regular stretching for the arms becomes necessary, especially the fingers, wrist, elbow and shoulder. Additional areas that require stretching may be identified on individual examination.
  • Night splints (ankle-foot orthoses or AFOs) can be used to help control contractures in the ankle. These need to be custom-made and not provided ‘off the shelf’. After the loss of ambulation, daytime splints may be preferred, but daytime splints are not recommended for boys who are still walking.
  • Long leg splints (knee-ankle-foot orthoses or KAFOs) may be useful around the stage when walking is becoming very difficult or impossible. KAFOs can be useful to help control joint tightness and to prolong ambulation and delay the onset of scoliosis.
  • Standing programs (in a standing frame or power chair with stander) are recommended after walking becomes impossible.
  • Resting hand splints are appropriate for individuals with tight long finger flexors.
  • Surgery can be offered in some situations in an effort to prolong the period of walking. However, this approach must be strictly individualised. More information about the different options is available in the main document.

Information based on consensus statement (published in January 2010)