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 for:
A seizure lasting longer than the person’s emergency plan allows
Repeated seizures without recovery between them
Breathing difficulty, blue or grey lips, or severe choking
Failure to regain usual awareness after a seizure
A serious injury, collapse, or inability to wake normally
Immediate risk of self-harm or harm to someone else
Follow any personalised seizure or 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
Contact the care team promptly if there is:
A clear increase in seizure frequency or a new seizure pattern
Coughing, choking, or a wet-sounding voice during meals
Unexplained weight loss or reduced fluid intake
Repeated falls or sudden loss of mobility
New fainting, marked dizziness, or an unusually slow heartbeat
Persistent low mood, severe anxiety, hallucinations, or major behaviour changes
3
Does any of this apply?
Book an appointment
Arrange routine medical review for new or gradually worsening vision, seizures, walking difficulty, mood changes, sleep problems, constipation, pain, or swallowing symptoms.
Also seek review if medicines cause troublesome side effects or daily care is becoming harder to manage.
Every sign above is quoted from the sofidex article on Spielmeyer-vogt-batten syndrome. If you are not sure, err upward — it is always reasonable to be checked.