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Warning-sign checks

Canavan 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 medical help for significant breathing difficulty, bluish or gray lips, severe dehydration, repeated choking, a serious injury, or a seizure that lasts longer than directed in the person's emergency plan.

    Emergency care is also appropriate when seizures occur back-to-back without recovery or when a first seizure is prolonged.

    Follow the individual's emergency plan and local emergency instructions.

    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 clinical team promptly for increasing coughing during meals, worsening feeding, poor weight gain, new seizure-like episodes, increased sleepiness, new pain, reduced movement, skin breakdown, constipation that does not improve, or a change in breathing during sleep.

  3. 3

    Does any of this apply?

    Book an appointment

    Regular follow-up helps the care team respond to changing needs.

    Visits may involve primary care, neurology, rehabilitation medicine, genetics, nutrition, speech and swallowing specialists, pulmonology, ophthalmology, orthopedics, and palliative care.

    Routine follow-up commonly reviews development, growth, nutrition, swallowing safety, seizure control, breathing, sleep, vision, muscle tone, joint movement, equipment needs, pain, and caregiver support.

    Families should also ask whom to contact between visits and how to replace or adjust equipment as the child grows.

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