stupid question

[smartyjones]

okay stupid question - but i'm wondering. . .

 

when i explain pandas i liken it to rheumatic fever which of course, gets nods, shocked looks, understanding sighs. even though i know most people - including me a year ago - don't really know what that means just that they've heard it's some bad illness.

 

why don't we all just have rheumatic fever diagnosis to make treatment, insurance, etc easier? is it b/c we're beholden to the doctors to give it? does it take hard core kidney and heart damage to get that diagnosis?

[peglem]

Yes, doctors have to dx rheumatic fever or rheumatic heart disease. And that's also a clinical dx.

[sf_mom]

BUT, It takes only one major and two minor symptoms to diagnose.

 

Typically, if you could confirm elevated ESR (typically only elevated 3 months post initial infection), Elevated CRP, Joint Pain, Chorea Movements, Heart involvement (only present in 60% of cases), confirmed strep, high anti-DNAse-B. You might receive RF diagnoses. Its my belief that PANDAS, is SC, is RF and maybe include Kawasaki's.....

[Suzan]

This diagnosis would get daily antibiotics which would be good. Does it allow for IVIG or PEX?

 

Susan

[sf_mom]

I am fairly certain they are using IVIG and PEX regularly for Rheumatic Fever and Syndham Chorea. One of Dr. K's coding used is for Rheumatic Fever Chorea. I can say you get a heck of a lot more respect from the average Dr. if its RF or SC 'that they understand'........ PANDAS they glaze over.

 

-Wendy