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Warning-sign checks

Apert 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
    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 care team promptly about new headaches, repeated vomiting, worsening snoring, breathing pauses, reduced hearing, eye irritation, changes in vision, loss of skills, or a clear change in behavior or school performance.

    These symptoms do not always signal a serious problem, but they should not wait for a distant routine appointment.

  3. 3

    Does any of this apply?

    Book an appointment

    Apert syndrome requires long-term follow-up because medical needs change with growth.

    Routine visits with a craniofacial team allow specialists to coordinate testing and avoid unnecessary duplication.

    Follow-up commonly includes checks of skull growth, head shape, vision, hearing, breathing, sleep, dental development, hand function, speech, and learning.

    Clinicians may examine the optic nerves for signs of pressure even when a child does not report headaches.

    Sleep testing may be recommended when there is persistent snoring, pauses in breathing, restless sleep, or daytime symptoms.

The article also says

Developmental progress should be reviewed during early childhood and school years.

Support can be adjusted when new academic, communication, movement, or social needs appear.

Transition planning can help adolescents move from pediatric to adult medical, dental, and mental health services.

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