Systemic aleukemic reticuloendotheliosis: 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
Is any of this happening now?
Call 911
Go to an emergency department or call emergency services for:
Severe or rapidly worsening breathing difficulty
Blue or grey lips
A seizure, new confusion, or difficulty waking
Uncontrolled bleeding
Sudden severe chest pain, especially with shortness of breath
Signs of severe dehydration, such as very little urine and marked drowsiness
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
If you already have LCH, contact your care team promptly about new symptoms, increasing pain, worsening rash, changes in thirst or urination, jaundice, unusual bruising, or a return of previous symptoms.
Seek urgent same-day advice for a fever during chemotherapy or other treatment that weakens the immune system.
Infection can become serious when white blood cell levels are low.
Follow the fever instructions provided by your treatment center.
3
Does any of this apply?
Book an appointment
Arrange a routine medical appointment for a persistent unexplained rash, ongoing bone pain or swelling, repeated ear discharge, unusual thirst and urination, or an unexplained swollen abdomen.
These symptoms are not specific to LCH, but they should be assessed if they continue.
Every sign above is quoted from the sofidex article on Systemic aleukemic reticuloendotheliosis. If you are not sure, err upward — it is always reasonable to be checked.