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Warning-sign checks

Familial dysautonomia: 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:

    • Severe difficulty breathing, blue or grey lips, breathing pauses, or unresponsiveness
    • Choking followed by ongoing breathing difficulty
    • A prolonged autonomic crisis with repeated retching, confusion, collapse, or inability to keep down fluids
    • A serious burn, head injury, major fall, or possible fracture, even with little pain
    • Sudden weakness, loss of consciousness, or another abrupt neurological change
    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 assessment for a new cough, fever, noisy breathing, reduced oxygen level, unusual sleepiness, or a clear change in breathing.

    These may be signs of aspiration or infection even when breathlessness is mild.

    A red eye, new light sensitivity, or change in vision also needs prompt assessment because eye injuries may not be painful.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange routine follow-up for gradual changes in walking, posture, swallowing, eyesight, sleep, blood pressure patterns, or weight.

    These are not usually emergencies, but they may require changes to ongoing support.

The article also says

Repeated vomiting, much less urine, a very dry mouth, or worsening dizziness may indicate dehydration.

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