Scoliosis is common in Rett syndrome and should be checked regularly, especially during growth and when mobility changes.
Key points to discuss:
- Ask for the spine to be examined at routine reviews and report new leaning, uneven shoulders/hips or seating problems.
- The need for X-rays and review frequency depends on clinical findings, growth and curve progression.
- Physiotherapy, activity, positioning and suitable seating support comfort and function but do not replace orthopaedic monitoring.
- Keep copies of measurements and imaging reports so progression can be compared.
- Referral to an orthopaedic/spinal specialist is important when a curve is detected or progresses.
Sources:
- The Kids scoliosis guideline resources: https://rett.thekids.org.au/resources/
- Consensus care guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC7488790/
Important: This post provides general information, not individual medical advice. Care and treatment must be personalised by qualified healthcare professionals. If you are worried that someone is seriously unwell, use your local urgent or emergency service.
Scoliosis screening and monitoring in Rett syndrome
Forum rules
Important: Experiences shared by members are for support and information only and should not replace advice from a qualified healthcare professional.
Important: Experiences shared by members are for support and information only and should not replace advice from a qualified healthcare professional.