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Warning-sign checks

Phenylketonuria: 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 a seizure lasting several minutes, repeated seizures without recovery, severe breathing difficulty, collapse, or unresponsiveness.

    Use the emergency plan provided with the medicine and seek emergency care for breathing trouble, throat or tongue swelling, faintness, or widespread hives accompanied by other symptoms.

    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 metabolic team promptly if you cannot keep down food or formula, have a prolonged illness, or are likely to run out of medical supplies.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange routine follow-up if blood phenylalanine results are repeatedly outside your target, you are struggling to take medical formula, or the eating plan has become difficult to maintain.

    New concentration, mood, learning, or nutritional concerns also deserve review.

The article also says

Seek early specialist advice if you are planning a pregnancy, think you may be pregnant, or have a positive pregnancy test.

This is time-sensitive but is not usually an emergency.

A serious allergic reaction can occur with some injectable PKU treatments.

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