My youngest started at age 6,(she is now 12) she missed 42 days of first grade.  The pediatricians were not familiar with PFAPA - she was diagnosed outside the practice by another doctor, so frustrating.  She too had tonsils and adenoids removed and cured the PFAPA, but experienced neurological issues such as a gait change and severe anxiety.  It has been a long journey.  

My oldest has been experiencing the same episodes for 4 months now, the same pattern.  Her neck lymph glands become enlarged 2 days before the fever starts.  So very sick with night sweats, fever, sore glands for up to 6 days.  She is a freshman in college and is struggling.  Off to the Rheumatologist today - I am hoping progress has been made since 2010 other than prednisone treatments which only made the episodes come more frequent for my youngest.

I am curious as to how it worked out with your daughter at age 18?