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
Seek urgent or emergency care for:
Severe side or back pain with fever or chills
Inability to pass urine
Signs of significant dehydration, such as very little urine, fainting, or unusual sleepiness
Confusion, a seizure, severe breathing difficulty, or loss of consciousness
A seriously unwell infant or child, especially with repeated vomiting, poor feeding, or reduced alertness
These symptoms can have several causes.
They require timely assessment rather than an assumption that aminoaciduria is responsible.
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 a clinician promptly for new blood in the urine, persistent urinary pain, worsening weakness, repeated vomiting, poor fluid intake, or symptoms of a urinary infection.
3
Does any of this apply?
Book an appointment
Routine follow-up depends on the diagnosis and may include repeat urine amino acid testing, blood chemistry, kidney function measurements, growth checks, nutrition review, and monitoring for stones.
People taking medicines for cystinuria or receiving mineral replacement may need additional blood and urine tests to assess effectiveness and side effects.
Keep scheduled follow-up if aminoaciduria remains unexplained, even when there are no symptoms.
Bring an updated list of medicines and supplements, and report any family history of stones or metabolic disease that becomes known.
Every sign above is quoted from the sofidex article on Aminoaciduria. If you are not sure, err upward — it is always reasonable to be checked.