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Warning-sign checks

Sturge-weber syndrome: 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 now for:

    • A first seizure
    • A seizure lasting five minutes or longer
    • Repeated seizures without normal recovery between them
    • New facial drooping, one-sided weakness, speech difficulty, confusion, or sudden vision loss
    • Severe breathing difficulty, serious injury, or failure to recover after a seizure
    • Sudden severe eye pain with redness, vomiting, or reduced vision

    Follow an 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. 2

    Is any of this happening?

    Be seen today

    Contact the usual healthcare team promptly if seizures become more frequent, change in pattern, or take longer to recover from.

    New headaches, changes in walking, loss of previously gained skills, or new problems at school also deserve assessment.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange an eye review for persistent redness, light sensitivity, blurred vision, changes in eye size, or concerns about sight.

    Keep routine neurology and eye appointments even when symptoms appear stable.

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