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Warning-sign checks

Alexander disease: 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 urgent or emergency care for:

    • Severe trouble breathing, blue or gray lips, or choking that does not clear
    • A seizure lasting about five minutes or longer, unless the person’s seizure plan gives different instructions
    • Repeated seizures without recovery between them
    • Sudden inability to wake, severe confusion, or a major unexpected neurological change
    • Signs of serious dehydration or possible aspiration with breathing difficulty

    People with known seizures or breathing problems should have an emergency plan developed with their clinical team.

    Caregivers, school staff, and other regular helpers should know where to find it.

    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 treating clinician promptly for new or gradually worsening swallowing problems, repeated coughing with meals, weight loss, increased falls, changes in seizure pattern, new weakness, worsening sleep symptoms, or loss of previously stable abilities.

  3. 3

    Does any of this apply?

    Book an appointment

    Follow-up should be tailored to symptoms and how quickly they are changing.

    Routine visits may review development, mobility, seizures, muscle tone, pain, nutrition, swallowing, communication, sleep, breathing, bladder and bowel function, and emotional well-being.

The article also says

Repeat MRI is not automatically needed at every visit.

A neurologist may recommend imaging when symptoms change, when the diagnosis is uncertain, or when the result could affect care.

Medication and equipment should be reviewed as a person grows or their abilities change.

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