Growth patterns in Rett syndrome may differ from the general population, but weight loss, faltering growth and nutrition problems still need careful assessment.
Key points to discuss:
- Track weight, height or length where possible, and changes over time rather than relying on one measurement.
- Review energy, protein, fibre, fluid, calcium and vitamin D with a dietitian familiar with complex disability.
- Consider meal duration, fatigue, swallowing safety, reflux, constipation and dental discomfort.
- Ask whether Rett-specific growth references are useful alongside standard charts.
- Avoid restrictive diets or supplements unless a qualified clinician has assessed the benefits and risks.
Sources:
- The Kids nutrition and growth 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.
Monitoring growth and nutrition in Rett syndrome
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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.