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
Follow the personal emergency plan rather than making major dietary changes without guidance.
Seek emergency care if a person with known or possible MSUD has:
New extreme sleepiness or difficulty waking
Confusion, unusual behavior, or poor coordination
Repeated vomiting or inability to keep emergency feeds down
Poor feeding in a newborn
Abnormal breathing
A seizure
Loss of consciousness
Tell emergency staff about MSUD immediately and provide the emergency letter if available.
A metabolic crisis can progress even when early symptoms seem mild.
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 metabolic team promptly during fever, infection, reduced appetite, vomiting, diarrhea, or difficulty taking the usual formula.
3
Does any of this apply?
Book an appointment
Routine concerns, such as food planning, stable test results, development, or preparation for travel and surgery, belong in scheduled follow-up with the metabolic team.
Every sign above is quoted from the sofidex article on Maple syrup urine disease. If you are not sure, err upward — it is always reasonable to be checked.