Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911
Call emergency services if the person has severe trouble breathing, turns blue or grey, cannot be awakened, or has a seizure lasting more than five minutes unless their emergency seizure plan gives different instructions.
Emergency help is also needed for repeated seizures without recovery, serious choking, or a severe injury.
Other emergency signs, for anyone
Someone who is struggling to breathe, gasping, choking, or cannot get words out
Someone who has chest pain, tightness or pressure lasting more than a few minutes
Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
Someone who is unconscious, or cannot be woken
Someone who is bleeding heavily and it will not stop with firm pressure
Someone who has had a seizure that will not stop, or does not wake up afterwards
Someone who has lips or skin that look pale, blue, grey or blotchy
Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen today
Seek prompt medical advice for:
A first possible seizure or a major change in known seizures
Frequent coughing, choking, or wet-sounding breathing during meals
Ongoing vomiting, diarrhoea, poor drinking, or signs of dehydration
Unexplained weight loss, persistent pain, or a sudden loss of function
A possible fracture, especially after a minor injury
Breath-holding can occur in Rett syndrome, but a new, prolonged, or severe breathing episode still needs urgent assessment.
3
Does any of this apply?
Book an appointment
Arrange routine follow-up with the clinical team for changes in walking, posture, spine shape, sleep, constipation, feeding, weight, communication, or seizure control.
New staring, shaking, or stiffening episodes should be assessed rather than assumed to be part of Rett syndrome.
Every sign above is quoted from the sofidex article on Rett syndrome. If you are not sure, err upward — it is always reasonable to be checked.