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Warning-sign checks

Phakomatosis TS: 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, serious injury during a seizure, or trouble breathing afterward.

    Follow an existing emergency seizure plan if one has been provided.

    Sudden chest pain with shortness of breath is also an emergency because it may indicate a collapsed lung.

    Severe abdominal or side pain with faintness may signal internal bleeding from a kidney lesion.

    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

    Arrange routine or prompt medical follow-up if you notice new seizures, increasing seizure frequency, changes in learning or behavior, persistent headaches, blood in the urine, worsening skin lesions, or gradually increasing breathlessness.

    Seek urgent medical advice for:

    • A first suspected seizure
    • Repeated infant head drops, body crunches, or sudden stiffening
    • Sudden severe pain in the side or abdomen
    • New weakness, fainting, or visible blood in the urine
    • Persistent vomiting with headache or unusual sleepiness
    • A clear decline in balance, vision, movement, or awareness

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