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 a seizure lasts five minutes or longer, seizures repeat without recovery, breathing is severely difficult, lips or skin turn blue or grey, choking blocks the airway, or the person cannot be awakened normally.
Sudden one-sided weakness, facial drooping, or abrupt speech loss also requires emergency assessment.
These changes should not automatically be assumed to come from the leukodystrophy.
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
New coughing during meals, unexplained weight loss, repeated chest infections, or increasing daytime sleepiness also need prompt assessment.
Seek urgent medical advice for:
A first seizure or a clear increase in usual seizures
Repeated choking or difficulty keeping down fluids
New breathing trouble, especially during sleep
A sudden loss of strength, balance, speech, or alertness
Fever with worsening cough after a choking episode
3
Does any of this apply?
Book an appointment
Arrange a routine medical review if there is a gradual change in walking, speech, swallowing, sleep, bladder function, school performance, or ability to manage daily tasks.
Every sign above is quoted from the sofidex article on Fibrinoid leukodystrophy. If you are not sure, err upward — it is always reasonable to be checked.