Infantile spinal muscular atrophy: when to get help
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 now if your baby or child:
Is struggling to breathe, gasping, or having pauses in breathing
Has blue, grey, or unusually pale lips or skin
Is choking and cannot cough, cry, or breathe
Is very difficult to wake or becomes unresponsive
Has a sudden major loss of strength with breathing difficulty
These changes need assessment but are not always emergencies.
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 urgent same-day medical advice for a weaker cough, increasing mucus, repeated choking, much less feeding, fewer wet diapers, fever with breathing changes, or greater effort needed to breathe.
Respiratory infections can worsen muscle weakness quickly.
Contact the child’s neuromuscular team promptly about a new decline in movement, feeding that regularly causes coughing or exhaustion, poor weight gain, morning headaches, disturbed sleep, or increasing sleepiness.
3
Does any of this apply?
Book an appointment
Routine follow-up should continue as planned for breathing tests, nutrition review, therapy, equipment, growth, and medicine monitoring.
Every sign above is quoted from the sofidex article on Infantile spinal muscular atrophy. If you are not sure, err upward — it is always reasonable to be checked.