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 emergency help if a baby or child with congenital nephrotic syndrome:
Is struggling to breathe, breathing very quickly, or turning blue or grey
Is unusually difficult to wake, has a seizure, or becomes unresponsive
Develops sudden chest pain, coughs blood, or has unexplained severe breathlessness
Has sudden painful swelling, colour change, or coolness in one arm or leg
Follow the child’s specialist emergency plan or seek urgent medical care.
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
Fever in a young infant needs prompt medical assessment.
A fever, shaking, marked sleepiness, or redness and discharge around an intravenous line may indicate a serious infection.
Contact the kidney team promptly about clearly reduced urine, repeated vomiting or diarrhoea, worsening swelling, rapid weight change, poor feeding, or problems with a dialysis catheter or intravenous line.
These changes can upset fluid balance quickly.
3
Does any of this apply?
Book an appointment
Routine appointments remain important even when the child seems well.
They are used to monitor growth, nutrition, thyroid levels, kidney function, clotting risk, medicines, development, and preparation for dialysis or transplantation when needed.
Every sign above is quoted from the sofidex article on Congenital nephrotic syndrome. If you are not sure, err upward — it is always reasonable to be checked.