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Physiotherapy for Rett Syndrome

Physiotherapists play a key role in the treatment of an individual with Rett Syndrome. As a baby, an individual with Rett Syndrome will have normal, full range of movements in all of their joints, however, it is important that this range is maintained to help prevent or delay the onset of physical deformities. Therefore, it is important that individuals are referred to physiotherapy at an early stage, even though there may be no physical problems evident. The main aim of physiotherapy for Rett Syndrome is to achieve the best quality of life possible for the patient, by preventing and delaying the onset of deformities. They also play a key role in facilitating the next stage of normal development.

Further aims of physiotherapy for Rett Syndrome include:

  • Postural management
    • Sleep systems should be considered due to prolonged time spent in bed
    • Chairs/wheelchairs should be specifically fitted and re-assessment should take place regularly as the child grows
    • Training for parents/carers on positioning of the child
  • Active or active-assisted movements
  • Minimise contractures/deformities by stretching the muscles to maintain elasticity
  • Passive movements to all joints to maintain or improve range of movement
  • Maintenance/Improvements of bone density - this is performed through regular standing
  • Maintain or improve overall function
  • Assessing for any appropriate adaptive aids
  • Facilitating stages of development, e.g. sitting, crawling, standing
  • Maintain or improve balance
  • Gait practise

During the initial assessment the physiotherapist will conduct a thorough assessment that will highlight any movement problems. Initially physiotherapy will focus on the maintenance of joint ranges as further problems with more complex motor skills will not be apparent until the child ages.

Amongst individuals with Rett Syndrome, there is an extremely high incidence of spinal deformities, including kyphosis and/or scoliosis. Regular monitoring for spinal deformities is important to ensure that early, appropriate treatments are provided as well as the assessment for the use of braces, casts or surgery, as required.

To arrange an assessment with one of our physiotherapists please contact us by emailing or calling 0330 088 6693.

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