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
Is any of this happening now?
Call 911
Seek urgent or emergency care for:
A suspected fracture with severe pain, obvious deformity, an open wound, or loss of feeling or circulation
A significant injury to the head, neck, or back
New weakness, numbness, loss of coordination, or loss of bladder or bowel control
Sudden or severe breathing difficulty
Chest pain, blue or gray lips, fainting, or inability to stay awake
When emergency treatment is needed, tell the team about the OI diagnosis and any known spine, airway, bleeding, or anesthesia concerns.
Necessary imaging and treatment should not be delayed because of fear of causing another fracture.
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
Is any of this happening?
Be seen today
Contact the care team promptly for new bone pain, reduced ability to use a limb, increasing back pain, worsening spine curvature, new hearing changes, persistent headaches, or a decline in walking or daily function.
3
Does any of this apply?
Book an appointment
Routine follow-up should match the person’s age and OI severity.
Visits may review fractures, pain, mobility, growth, spine alignment, bone density, nutrition, teeth, hearing, breathing, and emotional well-being.
Children may need more frequent review during rapid growth.
Every sign above is quoted from the sofidex article on Osteogenesis imperfecta. If you are not sure, err upward — it is always reasonable to be checked.