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Warning-sign checks

Prader-willi 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

    Call emergency services for choking, severe breathing difficulty, blue or grey lips, collapse, a seizure lasting several minutes, or inability to wake the person.

    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

    Get urgent medical advice for:

    • New abdominal pain, swelling, vomiting, or refusal to eat
    • Fever with unusual sleepiness or reduced responsiveness
    • A skin wound that becomes increasingly red, swollen, painful, or draining
    • A sudden major change in behaviour, thinking, or sleep
    • Symptoms of very high blood sugar, such as excessive thirst and urination
  3. 3

    Does any of this apply?

    Book an appointment

    Arrange routine medical follow-up for growth, weight, nutrition, development, hormone function, sleep, behaviour, bone health, and scoliosis.

    Seek a timely appointment if there is new snoring, daytime sleepiness, rapid weight change, reduced mobility, worsening skin wounds, or a lasting change in mood or behaviour.

The article also says

People with PWS may not show pain, fever, or vomiting in the usual way.

A clear change from their normal behaviour or energy level can therefore be medically important.

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