Emails from Parents
Thursday, September 24, 2009 1:24 AM
I just found your website--thank you for taking the time to create it and for accepting emails from concerned parents. Like Kameron, I think my son, Vance, may have periodic fever syndrome. I've read several articles about it and the description fits his episodes perfectly. His fevers come out of nowhere every 2 to 4 weeks--he runs anywhere from 103 to 105 (in the ear). Between episodes he appears to be perfectly healthy---he's never even had a common cold and he's 13 months old. His weight is 75 percentile and his height is 90 percentile, so no one thinks of him as a "sick kid." Yet, he is sick every couple of weeks with these scary high fevers which zap him of his appetite and energy. They last about 3 days and then he's back to normal. I don't know if he has any of the other symptoms of PFAPA besides fever. Because we've moved 3 times and he's seen several different doctors (and emergency rooms), his new doctor doesn't believe me when I tell her about his history. I'm now requesting medical records from every doctor he's ever seen, so that I have documentation of his episodes. Do you have any advice for me? I see that Kameron had loads of tests and a handful of great doctors before a diagnosis was made. Where did you find such great doctors willing to spend hours on this mystery? Six different doctors Vance has seen rule it a virus or a flu and send us on our way. I'm very worried for him and desperate to get to the bottom of things. Any advice/suggestions are greatly appreciated.
Bless you for your website!!
Wednesday, May 6, 2009 10:43 AM
Hi, my name is Dana Helms, mom to 2 ½ year old Parker. He started having fevers on Easter 2008 and has had them every 3-5 weeks until November 2008. Then we had a little break...only had one-day fever episodes in Dec, Jan, March. We saw a pediatric ENT at UNC hospital in November '08. I told her I thought he had PFAPA b/c I had been reasearching like crazy trying to figure out what he had. And I had documented every episode, how long the fever lasted and his other symptoms like not eating, putting hands in mouth b/c it hurt, red tonsils, and swollen lymph nodes in neck. She gave us prednisone to try on the first day of his fevers. We did and it made a difference for the episodes in Dec, Jan, and March. He's having another episode now but the prednisone didn't help this time. His fever rose this morning to 104. He's sleeping right now. The ENT said if he continues to have episodes over the next few months, then we'll do tonsillectomy maybe this summer or early Fall. The dr. wants him to be a little bigger since he's only 2 ½ and weighs 27 lbs. She worries about the risks after the surgery for bleeding??? Please tell me what the recovery was like for your son after his surgery. Thanks for listening and thanks again for developing your website about your experience with PFAPA.
Mom to Parker ,2 ½ and Grayson, 6
Monday, April 20, 2009 3:32 PM
The doctors were making me think that I was crazy. I got more information from your website than I have at any doctors appointment to date. My daughter is know 16months old and has had reoccurring fevers since she was 6months old. Every 2 to 3 weeks she will get a high fever (between 101.5 to 105.) and it seems to last 3 days. At this point I don't know if she has any pain anywhere because she is too little to tell me. I have been to her doctors office numerous times and have been told this is quite common in babies. She is our third and youngest child... I never experienced this with the other two... so I kept thinking how could this be common? I've never heard of anyone else's child having these reoccurring fevers... until I found your website.
They have yet to suggest anything to me other than this is "normal". No blood work has been done, not even a urinalysis!
Thank you for sharing your story. It made me realize that I'm not crazy and this is not normal. I will continue to ADVOCATE for my daughter until I get some answers.
Fever (concerned mom)
Monday, February 2, 2009 10:56 AM
I was so happy to find your web site. My daughter Emma was just recently diagnosed with PFAPA. Like you, I would really like to know what is causing this. If you are still doing your survey, I would like to participate.
It is actually pretty unusual to see a biologic rhythm of this period. Do you know if there has been any research done to investigate if this syndrome has a neurohormonal basis? The fact that prednisone suppresses the fever really makes me wonder.
I look forward to hearing from you. I live in a very small community and my daughter was diagnosed by an infectious disease specialist at a regional pediatric center. He admitted to me that he had never had a patient with this condition. Any information that you could provide would be greatly appreciated.
Thank you for your time,
Monday, January 12, 2009 9:30 PM
My name is Hayley Johnson. I just wanted to thank you for sharing your story. I have been going through some of the same things you experienced over the last year. My son will be 2yrs old this week. After months of the recurring symptoms of fever, mouth sores and swollen glands; I feel like I am getting some answers. My pediatrcian suggested PFAPA today. She did draw blood to rule out immune disorders. But my gut is telling me this is what he has been going through. I am thankful to read other people's stories and to finally feel some sense of consolation.
Thank you for your time