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
Get emergency help for:
Serious trouble breathing, blue or grey lips, or inability to wake
Choking with an inability to breathe or cough effectively
A seizure lasting five minutes or longer
Repeated seizures without recovery between them
A sudden severe change in awareness or responsiveness
Follow any individual emergency plan provided for seizures, breathing, or feeding problems.
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 clear loss of skills, a first seizure, repeated vomiting, signs of dehydration, unusual drowsiness, or a sudden change in muscle control.
These changes may have another treatable cause and should not automatically be attributed to the leukodystrophy.
3
Does any of this apply?
Book an appointment
Arrange routine follow-up if there are gradual changes in walking, stiffness, comfort, speech, feeding, sleep, bladder function, or ability to manage daily activities.
New coughing during meals, weight loss, repeated chest infections, worsening scoliosis, or equipment that no longer fits should also be reviewed.
Every sign above is quoted from the sofidex article on Sudanophilic leukodystrophy. If you are not sure, err upward — it is always reasonable to be checked.