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
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 specialist team promptly if a person with Krabbe disease develops new swallowing problems, more frequent choking, worsening stiffness, new weakness, possible seizures, reduced alertness, or a clear loss of abilities.
Seek urgent medical help for:
Breathing that is difficult, unusually slow, or interrupted
Blue, grey, or very pale lips or skin
A seizure lasting longer than advised in the person’s emergency plan
Repeated seizures without recovery between them
Severe choking or suspected food or liquid inhalation
Marked difficulty waking or a sudden major change in responsiveness
If a baby has an abnormal newborn screening result for Krabbe disease, follow-up testing should be arranged without delay.
This is time-sensitive, but a positive screen does not by itself confirm the condition.
3
Does any of this apply?
Book an appointment
Arrange a routine medical assessment if you notice persistent changes in development, movement, feeding, vision, hearing, or behaviour.
This is particularly important if Krabbe disease is already present in the family.
These changes may require an earlier review rather than waiting for the next routine appointment.
Every sign above is quoted from the sofidex article on Krabbe disease. If you are not sure, err upward — it is always reasonable to be checked.