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 for:
A seizure lasting five minutes or longer
Repeated seizures without recovery between them
Trouble breathing, blue or grey lips, or choking that does not clear
Sudden unresponsiveness or extreme difficulty waking
A significant head injury or possible bleeding
Sudden weakness or a major change in movement or awareness
Follow the child's existing emergency seizure plan if one has been provided.
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
Arrange prompt medical assessment if a baby has unusual hair together with poor feeding, slow growth, low muscle tone, developmental concerns, or possible seizures.
These signs have many possible causes and do not by themselves mean that the baby has Menkes disease.
If Menkes disease runs in the family, contact the baby's medical or genetics team as soon as possible after birth.
Testing before symptoms develop may affect treatment options.
3
Does any of this apply?
Book an appointment
During routine follow-up, report new or worsening feeding problems, vomiting, fewer wet nappies, changes in alertness, increased seizures, possible urinary infection, or signs of pain.
New loss of skills should also be assessed.
Every sign above is quoted from the sofidex article on Menkes disease. If you are not sure, err upward — it is always reasonable to be checked.