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
Seek emergency help for:
A seizure lasting five minutes or longer, unless the emergency plan says otherwise
Repeated seizures without recovery between them
A first seizure
Severe breathing difficulty, blue or grey lips, or choking that does not clear
Sudden unresponsiveness or a serious injury
Signs of a severe treatment reaction, such as breathing difficulty or facial swelling
Follow any personalised seizure or emergency plan provided by the clinical team.
And for anyone, someone who:
has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
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 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
Arrange a routine or prompt medical review if there are new seizures, worsening vision, repeated falls, loss of skills, increased stiffness, or changes in behaviour or sleep.
Coughing during meals, weight loss, long mealtimes, or frequent chest infections should lead to a swallowing and nutrition review.
Contact the specialist team promptly for redness, swelling, leakage, fever, unusual sleepiness, or pain around an implanted treatment device.
These may indicate infection or another device problem.
And for anyone, someone who:
has a new severe headache unlike any they have had before
Every sign above is quoted from the sofidex article on Neuronal ceroid lipofuscinoses. If you are not sure, err upward — it is always reasonable to be checked.