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PFAPA-periodic fevers
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PFAPA-periodic fevers

Has anyone ever heard of PFAPA or have a child that suffers from it??
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15 Comments
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Avatar_n_tn
Yes-go on website feversofunknownorigin.com they have symptoms and descriptions.  My daughter has had fevers for 11 months now- we do not have diagnosis yet.  
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Avatar_n_tn
My son is turning 5 tomorrow and he has ben diagnosed with PFAPA.  He has had fevers since he was an infant.  He was diagnosed with everything from viral tonsilitis to Rosiola due to his high fevers.  He suffers from all the symptoms.  Mouth sores, abdominal pain and of course the ridiculously high fever ( 106.2 anyone?).  About a year ago I started noticing the pattern and decided to keep a journal of the dates, times and temps of his fever episodes and sure enough they come every 20-25 days like clock-work.  He was tested for everthing and anything the pediatrician could think of, but nothing was wrong other than the fever.  We finally got in with the Infectious Disease division at San Diego Children's Hospital and I approached him with the PFAPA possibility.  He said that because of my diligent logging, he was almost certain it was PFAPA.  My son went through weekly blood test for about 6 weeks.  When nothing came up, his doctor gave the diagnosis of PFAPA.  We are currently on Cimitidine which he takes 2 times a day.  The fevers still come but now last only 2 1/2 days instead of 5.  The other treatment we are considering is having his tonsils removed as this has helped in many of the PFAPA patients.  Now that he is in scholl, we need to get this under control.  Also, steroids have been shown to get rid of a fever with in a couple hours but they still come back for the next round.  Other than the Tylenol and Motrin, there isn't much to do during these awful fevers but love your child.  I hope this helps.
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Avatar_n_tn
Hello Lindsay H,

My son is two and has similar symptoms...did you find San Diego Children's helpful? My wife and I are just looking for other parents locally that have dealt with this syndrome and have many questions...as our pediatrician believes it is PFAPA...

Thanks,

JPetty
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Avatar_n_tn
Our son has had cyclic fevers for about 5-6 months now and is two...the symptoms started with really high fevers (up to 105) and Tylenol and Motrin worked only well enough to get him down to 102 if we were lucky. We went to the doctor repeatedly and of course they tested him for Strep, ear infection, but no infection was found. He would be fine in between his fevers, which usually lasted about 4-5 days or so. He would always have a little redness in his throat as well but no mouth sores. Yesterday, we took him in again with a 104 temp and thought, here we go again...the doctor detected mouth ulcers on the roof of his mouth this time. The doctor said it looks like PFAPA and we had him take some predisone steroid which took away the fever within hours.

He didn't have abdominal pain (as far as we know - he just turned two) and didn't have swollen glands in his neck, but now we just wonder what to do? Who do we see? What specialist knows how to treat this? We are weary of giving him a steroid every 3 weeks, and have also read about cimetidine as well?

Is there anyone that has more information about this personally as I've read hundreds of websites and just wanted to see if anyone had a similar experience with their child and what worked, didn't, any advice would be appreciated as I know we're in the beginning stages...

God Bless,

JPetty
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Avatar_f_tn
My son is going to be 7 in 2 months and has been diagnosed with PFAPA.  He gets the fevers about every 10-14 days and it lasts about 3 days.  The next fever he gets they want to give him a dose of medicine to make the fever shorter.  His glands never go down (from swelling) in between fevers.  I was wondering if I am better off getting him a tonsillectomy.  Any comments??
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Avatar_f_tn
Hey Lindsay,
   I'm 16 and also suffer from PFAPA syndrome. I had the same symptoms as your son and suffered from very high fevers also. I think there is an alternative medicine your son could be taking, it is a steroid and takes my fevers away within 24 hours. It's called PREDNISONE and I take 60mg. It truly works like magic. I take it after i get 2 sores in my mouth or 1 sore with a fever. I hope this helps!
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1003475_tn?1283272375
Recovered!
Hi all,
I wanted to share my son's story of overcoming PFAPA in the hope that it may help someone's child, who suffers from the same. Here is our story:
My son's recurring fevers started at 6 months of age. Initially the fevers, occurring every 4 to 6 weeks like clock work along with swollen adenoids (adenoids) were his only symptom. No runny nose, cough infection or anything else. The fevers lasted 5 days and did not respond to tylenol and motrin. They would peak at 40'C every 5 hours. We were in despair, my husband was missing so much work, and we could do nothing for our sons suffering! At just over 1 year old he started to have a febrile seizure once during every episode. We were in the ER every month with no help. In August 2008 he had two seizures during one fever episode and spent 5 days in the Calgary Children's Hospital where he had a host of blood work and tests done, along with a brain scan. We were discharged with no answers,  only a referral to a pediatrian. At this time I began to do as much reading as I could and learned about PFAPA and it's various treatments but our pediatrician had never heard of it and wouldn't even entertain the idea that he might have it. The pediatrician sent us to an infectious disease specialist who diagnosed him with PFAPA, after just coming back from a conference on it and learning about it for the first time. We were very reluctant to start steriod treatment, and opted to go the route of adenoidectomy, although at younger than 2 our son was not yet old enough. So we prepared ourselves to wait.
Now for the good news! At around the same time as the diagnosis, we were contacted by an Upper Cervical Chiropractor in Calgary who had heard of our son's case and asked if he could see him. I was hesitant at first, not even knowing what "Upper Cervical" was and whether a chiropractor could possibly cause more damage than good. However we went ahead... The Dr. explained to us that Upper Cervical chiropractors specialize in the treatment of the very top bone in the spinal column, which encases the brain stem, called the atlas. They take very precise and careful measurements to assess whether it is subluxated (out of place). After performing x-rays on Benjamin it became apparent the his atlas was rotated and shifted over to one side, putting definite pressure on his brain stem. They also found on that very first day that the temperature on one side of the base of his skull was 1'C hotter than the other, another indicator of pressure on the brain stem. The day after his first adjustment, the difference in temperature was less than 0.25'C. Now for the best news! Treatments started at 2 to 3 times per week. The first month, he developed a fever, but it was entirely less severe and lasted only 2 days. He had a very minor seizure. The next fever was 8 weeks later, very mild and manageable with Motrin and no seizure. Then nothing for 3 months. Then a mild fever, but after a visit with the chiropractor, the fever ended after 30 hours. And now we have been fever and seizure free for 5 months! My son is himself again. He only goes to see the chiropractor once a month just to check up and they never adjust him unless there is a need. He loves to visit "Dr. Dave" and we have been so encouraged! If anyone has questions please let me know. I hope this brings encouragment!
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Avatar_n_tn
My daughter is going to be 5 and she has been sick over a year.  She gets sick every 3-4 weeks with these symtoms (symptoms).Here how her symtoms (symptoms) comes: first cough which gets worse than next day high fever with headache and abdominal pain. everything starts with cough followed by high fever. We took her to the doctor and he said that she has allergy or asthma.We did many blood test came nothing. Then we took her to infection and disease speci. and when the doctor heard about our case he said that she has PFAPA.Plese help if someone is went through this situation also where i need to take her and what test to be done. I want to find out what is wrong with my little girl. I haven't heard PFAPA with bad cough. Please help me.
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351246_tn?1379685732
Hi
Welcome to the forum!
I am sorry to hear about your daughter. I am providing you with a link that will help you: http://www.pfapa.net/
The site is still under construction but you can enroll your daughter with PFAPA registry and gather more information about studies and research in this field.
Chronic sore throats and cough can be allergic, viral or bacterial in origin. Many viral conditions like EBV (glandular fever) behave in this way with recurrent respiratory infections. Fungal infections in the body too can present similarly and need to be identified by scratch tests for fungus. A variety of drugs can cause drug fevers. Many cancers too cause recurrent respiratory infections.
Auto-immune disorders like juvenile rheumatoid arthritis present with fever, rashes, joint and body pains, pharyngitis and lymphadenopathy. Another disorder that should be considered is Polyarteritis nodosa (PAN).
Many parasitic infestations and worms increase the eosinophil counts in the blood and thus cause an increased risk of upper respiratory infections.
Please check and see if all these have been covered while investigating.
Hope this helps. Do let me know if there is any thing else and keep me posted. Take care!

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Avatar_n_tn
Has anyone seen white patches on their childs tonsils during their PFAPA episodes? My 6 year old daughter as chronic fevers, red and swollen throat and glands, plus white patches on her tonsils.  There are also small and moderately sized blisterlike spots in her throat and on her uvula.  She's been going thru this since last Christmas and was originally diagnosed with EBV.  Since her symptoms have been reoccurring for over 8 months her pediatrician referred her to an infectious disease specialist who has now mentioned PFAPA and advises to keep a journal.  We are stressed  but hopeful that we can find some answers...
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Avatar_m_tn
Hello,
I am wondering if anyone can tell me if PFAPA symptoms also include dizziness?  My son was just diagnosed last week with PFAPA during his last fever episode HOWEVER I am a little worried because his fever broke several days ago (like it normally does) but he is still dizzy.  Do any of your children suffer from dizziness or are we looking for another diagnosis?
Thanks
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Avatar_n_tn
It breaks my heart to hear these stories. My daughter too was diagnosed with PFAFA years ago.Low grade fevers every 19 to 22 days. 10 doctors and numerous visits.Miss so much school had to repeat. Well, my opinion is this is a made up diagnosed for doctors that can't figure out what the real cause is. My daughter ended up with Lyme Disease.  The Lyme testing is not accurate and it gets missed diagnosed especially in children.After 10 years and over a dozen doctors she still suffers from it today.  It is no longer in her blood ,so blood test would not confirm that she still has it.It was a brain scan and CD57 blood test. She was better with oral antibiotics then IV antibiotics.But it is still present in her body.The specialist still can figure out what antibiotic can kill the remaining bacteria(co-infections) I hear that )Prednisisone makes Lyme worse and it only worked for the first 2 times. A good Educated Lyme Doctor is hard to find. Go to a Lyme Disease Assoc. in your area.It's worth it to get it checked out. I sure hope its not Chronic Lyme Dissease.



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Avatar_m_tn
my son is two years old and has had reaccuring fevers since he was 6 weeks old, approx 25-30 days apart. We have had bloodwork done and have gone to a Infectious disease specialist.....in return no answers...His first Pediatrician mentioned PFAPA around his first birthday with the history of his first year of life but she didn't get support for a diagnosis. All these stories hit home and would love to get his fevers under control. He is so miserable for 5 days a month with fevers as high as 105...any advise would be wonderful :)
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Avatar_f_tn
I have a 13month old girl that is currently undergoing testing for PFAPA. Actually she is undergoing the testing to rule out anything else since there is no actual test for PFAPA. My little girl has been having these "episodes" since she was 8 months old. We are now seeing a Pediatric Infectious Disease doctor whom is confident that she will end up with a definate diagnosis of PFAPA. We have been going through all the same things as everyone else with the doctor appointments, fevers to 105 and the countless bottles of Motrin and Tylenol. It breaks our hearts to watch our sweet little girl suffer like this every 28 days. We wish everyone the best of luck with this fight and hope that your children out grow it quickly.
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Avatar_f_tn
A related discussion, My son was recently diagnosed PFAPA was started.
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