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 if someone with TSC has:
A seizure lasting five minutes or longer, unless their seizure plan gives an earlier threshold
Repeated seizures without recovering between them
Sudden severe shortness of breath or chest pain
Severe abdominal or side pain with faintness, weakness, or visible blood in the urine
A severe or rapidly worsening headache with vomiting, unusual sleepiness, confusion, or vision changes
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
A first seizure also needs prompt medical assessment.
Arrange a routine or prompt follow-up if you notice new seizures, changes in seizure pattern, worsening headaches, loss of skills, major changes in behaviour, new breathing limits, persistent kidney-area pain, blood in the urine, or a changing skin growth.
3
Does any of this apply?
Book an appointment
Routine TSC appointments remain important even when there are no new symptoms.
Contact the care team if you are unsure when the next brain, kidney, lung, heart, or developmental review is due.
Every sign above is quoted from the sofidex article on Tuberous sclerosis complex. If you are not sure, err upward — it is always reasonable to be checked.