Irregular awake breathing—including breath-holding, rapid breathing and air swallowing—is common in Rett syndrome. Patterns vary and can be frightening, but treatment depends on the individual pattern and its impact.
Key points to discuss:
- Record when episodes occur, how long they last, colour change, awareness, triggers and recovery.
- Video an episode if it is safe to do so and share it with the clinical team.
- Ask whether seizures, reflux, pain, anxiety, infection or medication effects could be contributing.
- Discuss whether oxygen levels, ECG, respiratory assessment or other monitoring is appropriate.
- Do not start oxygen, breathing medicines or supplements without specialist advice.
When to seek urgent help:
Seek urgent medical help for severe breathing difficulty, prolonged blue/grey colour, collapse, an episode that does not resolve as usual, or any situation in which the person appears seriously unwell.
Sources:
- Consensus care guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC7488790/
- The Kids Research Institute Rett resources: https://rett.thekids.org.au/resources/
- NHS Rett syndrome overview: https://www.nhs.uk/conditions/rett-syndrome/
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.
Breath-holding and hyperventilation while awake
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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.