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
Call emergency services for severe breathing difficulty, blue or grey lips, unresponsiveness, or a seizure that lasts several minutes or repeats without recovery.
Follow an existing emergency seizure plan if one has been provided.
These emergency signs are not expected simply because someone has Rubinstein-Taybi syndrome, but they require the same urgent response as they would in anyone else.
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
Seek prompt medical advice for:
Repeated choking, coughing, or breathing changes during meals
Loud snoring with pauses, gasping, or marked daytime sleepiness
A new lump, persistent unexplained pain, or a major change in movement
Signs of dehydration, such as very little urine or unusual drowsiness
A first suspected seizure or a clear change in known seizures
3
Does any of this apply?
Book an appointment
Arrange routine medical review for new concerns about feeding, growth, hearing, vision, sleep, constipation, pain, mobility, or behavior.
Developmental loss—losing a skill that was previously established—also needs assessment.
Every sign above is quoted from the sofidex article on Rubinstein-taybi syndrome. If you are not sure, err upward — it is always reasonable to be checked.