Creating Successful Outcomes for Even Refractory Diagnoses
This episode is all about creating winning strategies in healthcare and pain management when faced with rare, refractory and poorly understood diagnoses, that may not have any great treatment options. Story shared by the parents of my then 4 y/o patient with a rare and extremely painful condition, Erythromelalgia, highlights some of the elements that returned normalcy into their child's life despite this life long condition.
Takeaways in This Episode
How parents' early insights help with prompt and accurate diagnosis
How to proceed when little is known about a disease
What parents value even more than accurate diagnosis or treatment
What a parent sees, hears or feels when many specialists care for their child
What allowing parents to become active participants in healthcare can accomplish