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Warning-sign checks

Dysmyelogenic leukodystrophy: 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

    Seek emergency help for:

    • A seizure lasting longer than the person's emergency plan allows
    • Repeated seizures without normal recovery between them
    • Severe difficulty breathing, blue or grey lips, or unusual unresponsiveness
    • Choking with inability to breathe or cough
    • Sudden severe weakness or loss of consciousness

    People with known seizures or breathing problems may have an individual emergency plan.

    Follow that plan while arranging appropriate help.

    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 repeated coughing during meals, unexplained weight loss, increasing daytime sleepiness, more frequent falls, new seizure-like episodes, or a clear loss of previously stable abilities.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange a routine appointment for new or gradually worsening changes in movement, balance, vision, hearing, speech, feeding, sleep, pain, or school performance.

    Equipment that causes pressure marks or no longer supports the body comfortably should also be reviewed.

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