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
These concerns may require an earlier assessment but are not always emergencies.
Seek urgent or emergency care for:
Severe trouble breathing, blue or gray lips, or inability to speak because of breathlessness
Choking with ongoing breathing difficulty
Fainting, severe chest pain, or a sustained rapid or irregular heartbeat
Sudden major weakness, especially with fever, dehydration, or dark-colored urine
A serious fall, suspected fracture, or new inability to move a limb
Families should keep an updated list of the diagnosis, medicines, allergies, specialists, breathing equipment, and emergency instructions.
Before surgery, anesthesia, or sedation, tell the medical team about the muscular dystrophy.
Planning may require input from neuromuscular, heart, breathing, and anesthesia specialists.
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 for a clear decline in walking or daily function, new swallowing difficulty, increased falls, persistent pain, morning headaches, unusual daytime sleepiness, or signs of a chest infection.
3
Does any of this apply?
Book an appointment
Routine follow-up usually includes assessments of strength, movement, joint flexibility, growth, nutrition, bone health, heart function, breathing, sleep, and emotional well-being.
The timing of visits and tests depends on the type of muscular dystrophy and the child’s current needs.
Every sign above is quoted from the sofidex article on Childhood muscular dystrophy. If you are not sure, err upward — it is always reasonable to be checked.