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Old 04-13-2009, 05:33 AM   #46
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2day HB User
Re: PFAPA -what?

I am new to this board. My son was diagnosed last year with pfapa at the age of 9. He has been enduring pfapa for most of is childhood (at least since he was 3) His symptoms are high fever, nausea always, horrible canker sores (sometimes the size of my thumb print), swollen glands and white patches on his throat. He has not been on Prednisone or even Cimetidine as of yet. We have been doing supportive treatment like miracle mouthwash for the sores etc. His doctors are cautious to try the steroids. Due to frequent absences in school we are faced with the threatening notes questioning our commitment to his education. He remains one of the top students in his class. Any suggestions on how to address the school? We are very desperate to have this illness behind us and were told he "should" outgrow it soon. We are searching once again for a better treatment plan. Thank you for listening and sharing your stories. It feels really great to know I am not alone in this.

 
Old 04-14-2009, 10:03 AM   #47
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Linden123 HB User
Re: PFAPA -what?

I highly recommend the adenotonsillectomy (removing the tonsils & adenoids). My daughter has been symptom free since January after years of dealing with PFAPA. It is normally an outpatient procedure and the most common surgery for kids.

 
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Old 04-14-2009, 01:46 PM   #48
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Re: PFAPA -what?

The prednisone really works but it makes the episodes come closer together. My daughters fevers only last not even a day now but she is getting them about every other week. I guess it is a double edged sword. I am not sure if the cimetidine is doing anything. She has only been on it for 3 weeks and has been sick three times. Won't know if they are going to take her off of it until we see the specialist in May. I can not get them to take her tonsils out. I mention it every time but they just seem to keep trying different meds.

 
Old 06-17-2011, 12:31 PM   #49
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Re: PFAPA -what?

My son suffered from chronic fever (FUO) as high as 104 and each time the doctors would run strep test, then send us home with some antibiotic "just in case", with no explanation. After 5 months of recurring fevers (every 5 weeks like clockwork), I got online and found this forum.

I was shocked at how my son exhibited all of the symptoms listed for PFAPA. Since he's been old enough to speak, he's had frequent headaches as well, at least two a week requiring ibuprofen or acetaminophen to comfort him. I called his PCP and the ENT we had scheduled an appointment with, and to my surprise, they hadn't heard of it.

The ENT that saw my son, immediately recommended a tonsillectomy, citing the lesions/infection on his tonsils, which surprised me as I figured I would have to twist his arm for tonsil removal.

His tonsils came out April 12th, and he hasn't has a head ache, sore throat, or fever since (knock on wood). He's much healthier, and quicker to recover from a hard day of playing.

The recommendations for a tonsillectomy as a cure for PFAPA were right on in our case, and I'm very happy with this decision we made for our son.

 
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