Constipation is common in Rett syndrome and may show as hard or infrequent stools, straining, bloating, reduced appetite, sleep disturbance or unexplained agitation.
Key points to discuss:
- Track stool frequency and consistency, pain, soiling, food and fluid intake, activity and treatments.
- Ask the team to review hydration, fibre, mobility, medicines and toileting position.
- A regular prevention plan is often easier than repeatedly treating severe episodes.
- Sudden behavioural change may be a sign of pain in someone who cannot describe it.
- Discuss a written bowel plan with the clinical team; treatment and doses must be personalised.
When to seek urgent help:
Seek prompt medical advice for severe or increasing abdominal pain/swelling, repeated vomiting, blood in stool, fever, dehydration or no stool with significant illness.
Sources:
- Consensus care guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC7488790/
- The Kids Rett gastrointestinal resources: https://rett.thekids.org.au/resources/
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.
Constipation: a Rett-specific symptom checklist
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.