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Warning-sign checks

Fragile X 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

    These concerns require assessment but are not always emergencies.

    Call emergency services if:

    • A seizure lasts five minutes or longer
    • Seizures repeat without recovery between them
    • Breathing is difficult or the person does not recover as expected
    • There is an immediate risk of serious self-harm or harm to others
    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, new loss of established skills, persistent pain, a major unexplained behaviour change, or medication side effects.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange routine medical follow-up for concerns about development, speech, learning, attention, anxiety, hearing, vision, sleep, feeding, or bowel habits.

    Assessment is also appropriate if fragile X or an FMR1 premutation has been found in a biological relative.

The article also says

Follow any existing seizure or crisis plan.

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