Building a multidisciplinary Rett care team

Rett syndrome can affect many body systems, so coordinated care is usually more useful than treating each concern in isolation.

Key points to discuss:
- A core team may include primary care, neurology, genetics, gastroenterology/nutrition, physiotherapy, occupational therapy and speech and language therapy/AAC.
- Depending on symptoms, cardiology, respiratory or sleep medicine, orthopaedics, dentistry, endocrinology, gynaecology and palliative care may also help.
- Nominate one clinician to coordinate plans and share reports between services.
- Take an up-to-date medicines list and health summary to every appointment.
- Ask each service what should be monitored routinely and which changes should trigger earlier review.

Sources:
- IRSF managing Rett care: https://www.rettsyndrome.org/about-rett ... rett-care/
- Kennedy Krieger interdisciplinary Rett clinic: https://www.kennedykrieger.org/patient- ... ers-clinic
- 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.