This is my first post on HealthBoards. my daughter, age 6, has (I believe) PFAPA.
She has suffered from periodic fevers for at least a few years, but they seemed to become more intense and regular a couple of years ago. For a while we were all under a tremendous amount of stress and confusion. She kept getting these intense fevers and we had no idea why. Her lymph nodes would become infected and swollen and she complained of headache and stomach pain. Several times she was hospitalized and put on an IV with all kinds of antibiotics, then finally last autumn one doctor--our hero--told us about PFAPA. We read about it and suddenly it all made sense. Since then she deals with her fevers at home, without medication.
She still gets fevers about every month, on average, and the intensity has not waned. We have read a tonsilectomy has eliminated PFAPA in some cases, but not others, and hesitate to put her through this procedure. Our doctor has said that her tonsils are generally fine and are not infected during her fever episodes.
I have noticed something interesting about this illness, though. It seems to me that every two weeks or so my daughter becomes tired and she has this look which suggests that a fever may strike. Sometimes it does then, and sometimes it doesn't. I wonder if it is important for her to get enough rest at these times. I wonder if anyone else has noticed such "warning signs", and how they attempt to prevent fever attacks when these signs appear (and if anything works)?
I also wonder how parents deal with absences from school, and how they explain PFAPA to teachers and other people.
Any experiences and insights would be appreciated!