from Swedo's landmark 1998 paper

[EAMom]

This is from the paper on the first 50 cases http://ajp.psychiatryonline.org/cgi/reprint/155/2/264.pdf , confirming what parents here observe:

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

[thereishope]

I keep trying to explain to doctors, once that Pandora's box opens, it never truly closes. The first trigger was strep for my son. Since then, I have seen smaller setbacks with a cold and allergies. When it was the cold and allergies, the symptoms were not remotely as bad and there wasn't a long recovery. Ibruprofen helped with the cold and the behavior restabilized once the cold passed. With allergies, as long as he took dye free Benadry, the behvaiors remained stabilized.

 

Strep still remains the main culprit that causes the most damage, the most severe behavior changes and involves a lengthy recovery.