Hi, My name is Kameron and I am three years old. I have two sisters and one brother. My mommy made this site for other parents going through the same thing as her. Mommy and Daddy are worried about me. I keep getting recurrent fevers since March 2000 that last for 5 days and can reach up to 105.7 degrees. They come back every 2-3 weeks. My pediatrician told mommy to keep a diary, but mommy was already doing that. He said to bring me back in a couple of months if I was still having them after he did multiple blood tests, chest xray, urine analysis and cultures for viral and bacterial infections. All my tests came back negative, except my white count was high (normal about 8,000 for my age) but during fevers, they were higher than 19,000 always on the rise. On my fourth fever I started having joint pains and abdominal pain. Mommy was worried because with my other fevers, I didn't have anything but fever. We went back to the doctor and he referred mommy to take me to see a rheumatoid specialist for JRA or Junior Rheumatoid Arthritis.
We went to see the specialist who was very kind and concerned. She took two hours with me on my first visit, examining me thoroughly. She told my mommy that she didn't think I had JRA because I didn't have any joint swelling. She thought that it was best that we saw a malignancy doctor to rule out leukemia while we were there. The next day I had a bone marrow aspiration and an abdominal cat scan. Both tests were negative, Mommy says HOORAY!!! The rheumatoid doctor told mommy that she wanted to see me during my next fever, I think so she could double check that I didn't have any joint swelling. Well three weeks later, we were back in her office. She spent three hours with me and mommy, checking me good and talking with mommy. She read up on mommys diary and made copies of it. The doctor told mommy that she wanted to do one final test on me which requires me to give blood twice a week for six weeks to rule out cyclic neutropenia. She said she will be diagnosing me with Periodic Fever Syndrome upon that test being negative.
Periodic Fever Syndrome is so new that most doctors are still not diagnosing it yet. The doctor gave mommy a ten page study that was done by a doctor at the Vanderbilt University in Tennessee. He did the study on 100 children with similar symptoms for ten years. Mommy got ahold of him by email hoping there was still a study going on, but there isn't. He wished us the best of luck. To date, there is still no known Cause for the Periodic Fever Syndrome, which is very similar to Mediterranean Fever.
My mommy wants to list the symptoms of this Periodic Fever Syndrome so other parents are more aware of it. Mommy says, not all kids will have all symptoms at one given time and some kids won't get all of them either. The symptoms are as follows: High recurrent fevers, Abdominal Pain, Pharyngitis (Red Throat), headache, joint pain, mouth sores and an Elevated white blood count.
Mommy says anyone wanting more information can write to us via email on the contact page.
Mommy will add a link to the original study report and the diagnosis to the on the Important Info. page for any parents who wish to have this information. She also says If you would like your doctor to rule PFAPA out that you should give your doctor this information to better aquaint himself with these findings. Tell your doctor to look up the information regarding PFAPA in the Journal of Pediatrics Volume 135, Number 1 in the July 1999 issue.
Mommy says to thank all parents well in advance and to always say "Thank You". (THANK YOU).
IMPORTANT UPDATE BELOW:
Following the study report information regarding the removal on tonsils and/or adenoids from 11 children in the study with which 7 had fevers relieved all together, 2 had a reduction in fevers and 2 had no change, I took it upon myself to ask for a referral to take my son to an ENT (ear, nose, throat specialist) to discuss his case and what I wanted to do. He whole heartedly agreed that he see's lots of children with recurring fevers and after removal of tonsils and/or adenoids recovered. He was more than happy to agree to the surgery for Kameron to have his tonsils and adenoids removed on January 5, 2001. Kameron made it through the surgery fine and had his 10 days of healing and lots of icecream and cold products. He had a minor fever for 1 full day on schedule after the surgery, but has not had one since. He is over due by almost 2 years.. This is great news for us and i hope the one he had after surgery was his body trying to rid itself of the biological clock it has been on for over a year now with these fevers. Kameron never missed a fever in the year he has been having them, so I am very very happy right now and hope that even if it does come back, that it will be less severe as before.
September 3, 2009: Kameron still has not had a fever since the removal of his tonsils. Only thing he has had is astomatitis or blisters in the mouth once really bad. Sometimes a upset tummy, but thats it. Im Happy for us all!