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Warning-sign checks

Angelman 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

    Seek emergency help for a seizure that lasts longer than the person's seizure plan allows, repeated seizures without recovery, serious breathing difficulty, severe choking, a major injury, blue or gray skin color, or sudden unresponsiveness.

    Follow the person's emergency plan and local emergency-service 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

    Does any of this apply?

    Book an appointment

    Routine follow-up may involve primary care, neurology, genetics, developmental or behavioral specialists, rehabilitation therapists, and school or community services.

    The care team may monitor seizures, sleep, growth, nutrition, constipation, vision, dental health, mobility, joint range, and spinal curvature.

The article also says

Medication reviews are important because seizure patterns, sleep, weight, and other health needs can change.

Transition planning for adulthood should begin before pediatric services end.

It may cover adult medical care, decision-making support, education, employment or day programs, transportation, housing, and caregiver planning.

Contact the usual care team promptly for non-emergency concerns such as:

New or more frequent brief seizures

Increasing sleep, feeding, constipation, pain, or behavior problems

Repeated coughing or choking with meals

A change in walking, posture, or use of an arm or leg

Loss of a previously stable skill

Medication side effects

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