Our lives changed June 2007, when our almost 3 year-old daughter Amia, started running high fevers. At first we thought she was just sick, yet when she kept having high fevers, I knew something wasn’t right.

While we had blood work completed, I researched her symptoms on the computer with every spare second I could find.   After almost 2 yrs of Amia running high fevers every 4-6 weeks, along with serve body pain, leg pain, belly pain, mouth sores, swollen neck glands and intense throat pain that would last 3-5 days each time, our pediatrician finally got on board and we started our long journey to a diagnosis. We visited many different doctors and Amia was subject to a myriad of tests, before we determined her final diagnosis of PFAPA.

Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome (PFAPA) is a rare periodic fever disorder that currently has no definitive testing available or cure. Because there is little known about the disease, the diagnosis is usually based on symptoms and treatment.

We have tried different medications to help control the cycles. Prednisone is a life saver because within 1 -2 hours of this dosing, her fevers and symptoms are gone.   And, we love to see her, once again, a happy normal second grader who loves reading and animals and who wants to be a Zoo Keeper – despite her diagnosis!

Our hope for Amia and others like her is for more research, answers, and one day maybe a cure.  It pains us to see her suffer with temperatures as high as 105, with body and leg pain and all her mouth sores.  Our hope is she will continue being the bright, energetic beautiful person she is now and overcome this horrible unknown disease.

Mitzi Evans
Dunnellon, FL

4 thoughts on “Future Zoo Keeper with PFAPA”

  1. Clare Cliff says:

    It seems my 18 month old has PFAPA. High Fevers like clockwork every 4 weeks, sore throat and joints…and just plain discomfort. Did you find the Prednisone increased the fever episodes and shortened the time in between?

  2. Natalie George says:

    Hi Mitzi! It’s amazing the research a mother will do when we feel backed up against a wall. My nine year old daughter has PFAPA also. She was diagnosed four years ago. I wish I could say I have great news and had some words of wisdom. But I found this sight by accident while doing some more ” mom research” on yet another possible aspect of the disease. We have tried everything from high doses of Cimetidine, tonsillectomy, Advil, and Orapred (which is about the only thing that has offered relief). Everything that goes on with this child (Appendicitis, Asthma, and now it appears that there might be a possibility that prolonged sun exposure seems to trigger her PFAPA) makes me always question the disease or at least try to link everything to it. She has never been the classic case from day one which has made it even more difficult. She didn’t really show signs to my knowledge until she was almost five. I have come to my own conclusion that there are just too many different variying opinions by doctors to think they really know everything about it. In the mean time we just treat with an oral steroid when she can’t handle the pain any longer. I use to just automatically give it to her on the onset, but honestly I’m not comfortable with her being on a steroid so often. I wish you much luck and pray your daughter does better with it.
    Natalie George
    Atlanta, Georgia

  3. Eva Z. says:

    Hello everyone, there is a hope. My son was fully cured from PFAPA without steroids and Tonsillectomy! To fully understand how I will take you throughout our journey. My son started to have the episodes with high fevers, sore throat, mouth sores, swelling of the glands in the neck, stomach aches and headaches back in December 2014 when he was 5 year old. Originally because his neck was very swollen doctors though he had a Mono, but multiple testing was negative. When the fevers started to coming back every 4 weeks and lasting for 7 days I started to taking him from specialist to specialist ( Pediatrics, ER visits, 3 diferent ENT, Allergist, Immunologist) looking for a answer. After many unsuccessful treatments (like 2 weeks of antibiotics and steroids) and countless blood test and diagnostic tests we were referred to infectious disease specialist in Cohen children’s medical center in NY when he was diagnosed with PFAPA syndrome. My sons fevers always started with a swelling of his neck = lymph nodes and tonsils that he will complain ”mom my neck hurts” so then I knew it the fever was coming the same day. It was very frustrating to me to see my child suffer and that the modern medicine has no answers for us beside the Steroids and Tonsillectomy that in some cases is not even working. I tried healthy diets, supplements, exercises – the fevers got weaker but they still persisted. When he started his first grade and the fever started strong again we decided to try the Prednisone in a fear that my son will loose to many days from school and fall behind ( in Kindergarten he lost 6 weeks of school). It did not work, the fever was back in 4 days and lasted 7days. On this point knowing that the only available treatment is the surgery I contacted the Alternative Medicine doctor – Savely Yurkovsky,Md that someone strongly recommended to us but we had to wait 3 weeks before seeing him. His office send me a paper work that has to be filled out before first visit and one of the questions beside asking what diet you eat and what water you drink was a question: in what room the power lines come to your house? …right away I realized they coming to my sons bedroom and his bed is placed against the wall where the lines run down to the electric box that is underneath in a garage! If the MD is asking about that it must be important for your health so I started to search online and find out that this emits very strong EMF (Electromagnetic radiation) so same night I move my sons bed to the farthest place in a room away from this wall. I ordered device online that measures the EMF- O god ! the radiation was so strong ! It is the same like standing 1 foot from running microwave! I was crying two nights now knowing that my son was sleeping there for the last 4 years! (Why none of the other doctors are talking about it?! Who will want to sleep with a head stack to running microwave! For sure this in not healthy! ) Now I was sure this Md knows something that others don’t so we went. He developed FCT ( Field Control Therapy) and is using a Bio-resonance to diagnose and treat any condition and by his first visit he determined that my son had chronic Strap A, Strap B infection some viruses and parasites in his body, his digestive track bacterial flora was unbalanced and he had heavy metal – mercury in his Tonsils – all very shocking to us because we did so many blood tests, strap test swaps and Ultrasound screening of his Tonsils and they never find any of it! Yurkovsky skillfully design treatment protocol that includes homeopathic remedies, specifically selected probiotics, strict diet (no sugar at all even fruits and sweet veggies are not allowed) and avoidance of EMF (electric tools, TV, computers, video games, radio even driving in a car). We did the treatments without any problems and my son really enjoyed them (we spend a lot of time playing together and reading books) and since the first treatment my son never got his PFAPA again. Now 8 months after and goings strong and more healthy then ever. During his last check up visit with Yurkovsky he was clear of all previous finding. My son was so healthy this year that he only lost 2 days of school due to regular cold (light fever under 101 lasting 2 days, no meds needed). He is a happy child! Please thing “out of the box” in terms of PFAPA, maybe moving your child’s bed will help since the modern medicine is not acknowledging the EMF danger or heavy metals toxicity. There is 50% of mercury in silver teeth amalgam. Mercury is number one toxin for human body, stronger then arsenic and lead. I did have a amalgam since childhood and throughout the pregnancy and nursing my son. The mercury can cross placenta and can easily pass to breast milk and that is how my son possibly got the mercury in his Tonsils. Now thinking back in time he was always fussing when breast-feed and early on he developed a bad skin eczema on his neck. That could be the connection?! ( you can watch some facts in 60 MINUTES on Mercury Fillings http://www.youtube.com/watch?v=Ij-51ZZpyF8&sns=em . Now is all gone and healed. Knowledge is a key, take the care in your own hands. Hopefully you will find your answers and find help for your child. Doctor Yurkovsky website: http://www.yurkovsky.com, he dose teach other doctors from all over the USA and around the world this technics so you may contact his office for FCT Md in your area. Fill free to ask me any questions, there is more I know but it will be overwhelming at once. Good luck!

  4. Tammy says:

    Hi Eva,
    Is your son still free of fevers? I am very curious to know as my son will be 2 in September and was just diagnosed with PFAPA. I have been doing research on this day and night. I am currently using essential oils with Motrin to control it. I look forward to hearing more.
    Thanks!

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