PFAPA Syndrome

Today Erin had a pre-op physical appointment with her Pediatrician for her procedure next week.  Last night, she began to run a fever....again.  As I have mentioned before, Erin gets sick frequently.  Every, two to four weeks we have the same symptoms: high fever (102  up to 105 at times), red and inflamed throat, and swollen lymph nodes.  These symptoms last for about 5-7 days and then she is back to her normal self.  This has been going on for over a year now.  We have been quite frustrated by this.  First of all, no one likes for their child to be sick and to suffer.  Secondly, she doesn't sleep well when she's sick.  I spend those 5-7 days getting about 3 hours of sleep a night. (This really gets old fast!)  We have taken her in repeatedly to her doctor when she gets sick.  They have always done a strep test....which comes back negative.  The resulting diagnosis: fever virus!  Ok...I know children get fever viruses, but this frequently?  It also has always struck me as odd that Grant, who is just 17 months older than Erin, has never contracted the so called fever virus.  The doctors would just tell me that he has more immunity to these things because he is older.  I didn't buy it, and I had just about given up on our Pediatrician's office, until our visit today.

I decided before we went in that I wasn't going to make a big deal out of the fever.  I was so tired of the same diagnosis, and quite frankly felt like they weren't taking me seriously.  (Even though this is the second time Erin has been sick with her usual symptoms in 6 weeks)  When the nurse was taking Erin's vitals I warned her that she was running a fever again and that it was her usual routine.  When the doctor came in she questioned me a bit about the fevers and Erin's history.  When she left to fill out Erin's paper work, that the Opthalmalogist needed, she was gone for a while.  When she came back in she had a diagnosis : PFAPA Syndrome.  I had never heard of it, but after she explained it to me, I knew it fit.   It feels good to finally have some answers to Erin's mystery illness.  Most children grow out of it by school age, but some do not.  It also explains why no one else was getting sick.  (This always bugged me because I was sure that one of us would catch this every now and then.)  Now, I guess, we will monitor her for treatment.  Most of the research suggests Prednisone, which doesn't cure the fevers, it just cuts down the time the child has the fever.  (I'm not sure if I like the idea of Prednisone.)  They have also seen promising results with Tonsillectomies.  If she doesn't outgrow the syndrome this may be an option for her.