sofidexFor patientsAre you a clinician? Clinical site
Ask Sofi
Listen
Patient SupportEmergencies & Reporting
Log inSign up

Warning-sign checks

Alobar holoprosencephaly: 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

    Equipment, medicines, and the emergency care plan should be reviewed regularly.

    Families should also be offered practical and emotional support, including respite care when available.

    Seek urgent or emergency care for:

    • Severe or persistent trouble breathing, blue or gray lips, or long pauses in breathing
    • A seizure lasting longer than the child's emergency plan allows, or repeated seizures without recovery
    • Choking with ongoing breathing difficulty
    • Extreme sleepiness, poor responsiveness, or a sudden major change from the child's usual behavior
    • Signs of severe dehydration, such as very little urine with marked drowsiness
    • Any situation that the child's written emergency plan identifies as an emergency

    For children receiving comfort-focused care at home, the plan may direct families to call the palliative care or hospice team instead of emergency services.

    Families should know whom to contact at any hour.

    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 child's clinical team promptly for a new feeding cough, repeated vomiting, worsening constipation, changes in seizure pattern, reduced urine, unusually high urine output, fever, new discomfort, or trouble using medical equipment.

  3. 3

    Does any of this apply?

    Book an appointment

    Follow-up should be coordinated around the child's needs and the family's goals.

    Visits may involve primary care, neurology, endocrinology, gastroenterology, nutrition, pulmonology, rehabilitation, genetics, and palliative care.

    When possible, combining appointments or using home-based services can reduce the burden of travel.

    Routine follow-up may monitor growth, feeding tolerance, seizures, breathing, muscle tone, skin health, urine output, sodium, and other hormone measures.

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