We describe an infant presenting with intermittent discolouration and swelling of her fingers and toes occurring with changes in ambient temperature. Extensive investigations revealed raised inflammatory markers as well as sclerotic lesions within the phalanges and diffuse marrow oedema. Infectious and inflammatory causes were considered and excluded based on the clinical presentation and investigation findings.
View Article and Find Full Text PDFContext: For parents, family, or clinicians of children with rare life-threatening conditions, there is little information regarding likely symptoms, illness trajectory, and end-of-life care.
Objectives: This descriptive analysis of a bereaved cohort recruited in the charting the territory study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders, and care provided preceding and during the end of life.
Methods: Of the 275 children enrolled in the Charting the Territory study, 54 died between 2009 and 2014.