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
These changes are not always emergencies, but they may require assessment or an adjustment to support.
Call emergency services for:
A seizure lasting longer than the person’s emergency plan allows
Repeated seizures without recovery between them
Severe breathing difficulty, blue or grey lips, or long pauses in breathing
Choking with an inability to breathe or cough
Sudden unresponsiveness or a major change in consciousness
Follow any individual seizure, breathing, or feeding emergency plan already provided.
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 fever with chest symptoms, repeated vomiting, signs of dehydration, increasing sleepiness, or possible aspiration.
3
Does any of this apply?
Book an appointment
Arrange routine medical follow-up if you notice new stiffness, reduced movement, changes in alertness, feeding taking longer, coughing during meals, weight loss, constipation, pain, sleep changes, or a change in seizure pattern.
Every sign above is quoted from the sofidex article on Sphingolipidosis 1. If you are not sure, err upward — it is always reasonable to be checked.