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Warning-sign checks

Tuberous sclerosis-1: when to get help

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. 1

    Is any of this happening now?

    Call 911

    Call emergency services for:

    • A seizure lasting five minutes or longer
    • Repeated seizures without recovery between them
    • Serious breathing difficulty or sudden chest pain with breathlessness
    • Sudden severe abdominal or side pain with fainting, weakness, or blood in urine
    • Severe headache with repeated vomiting, unusual drowsiness, confusion, or new weakness
    • Immediate risk of self-harm or suicide

    Use the person's seizure emergency plan when one is available.

    Do not restrain them or place anything in their mouth.

    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. 2

    Is any of this happening?

    Be seen today

    Seek prompt medical advice for a first suspected seizure, a clear change in seizure pattern, new shortness of breath, visible blood in urine, persistent headache, unexplained loss of skills, or major changes in mood or behaviour.

    Do not wait for a routine appointment if symptoms are new, rapidly worsening, or severe.

  3. 3

    Does any of this apply?

    Book an appointment

    Routine follow-up is appropriate for stable skin changes, planned surveillance scans, medication monitoring, developmental reviews, and discussion of genetic testing or pregnancy planning.

Every sign above is quoted from the sofidex article on Tuberous sclerosis-1. If you are not sure, err upward — it is always reasonable to be checked.