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Old 06-04-2008, 05:18 PM   #1
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bek23 HB User
Question PFAPA (Periodic Fever Syndrome)

Just wanted to throw my .02 in.

I'm a 26 year old with PFAPA. I'm otherwise a healthy male. I had PFAPA as a child(although it wasn't diagnosed as such then, I know better now). It got so bad that I had to be hospitalized a few times. It eventually went into remission.

About 5 years ago it resurfaced. It's not as bad as it is with some. I generally get the fevers(and the headaches, sore throat, aches and pains) about 4 times a year. I just recently discovered PFAPA through research of my own. Doctors like to shrug it off as the flu or some other common disease.

I plan on taking a trip to the doctor soon and getting a steroid prescription. We'll see how it works on me and if it increases the frequency of my fevers. I certainly hope it does not. Luckily I do real estate and am my own boss, otherwise it would be impossible for me to hold a job. They wouldn't put up with me missing work 15 days a year, I'm sure.

Just letting you all know that is likely to remiss eventually and that I'll keep you updated on my progress as an adult.

 
Old 06-08-2008, 03:47 PM   #2
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stacyeb HB User
Re: Question for Cissa4 and a Question about Son's Symptoms: could it be PFAPA?

Quote:
Originally Posted by cissa4 View Post

My son is 2 1/2, and I've been told that even in a rare disease group, my son is rare. His fevers are pretty much all the time, and so far we have seen no pattern. While there are some PFS's that do not have set patterns, they are still "periodic" in that they come and go. In a month we're lucky to have 5 days of a normal temp. His other symptoms include fatigue, alternating bouts of constipation and diarrhea, and we're guessing muscle/abdominal pain. I say guessing because at his age it's not like we're getting a detailed acount!!!! LOL We're just going on his actions, tears, and irritability. He did tell us for the first time the other day that his tummy hurt. I have read that for the PFAPA that sometimes a tonsilectomy does work; however according to studies they have no idea why and so it's not an automatic procedure when diagnosed. I've read both ways from parents that have gone through with it. Some have great success with no more fevers, and others go for a while and then the fevers return. If I remember correctly though it doesn't work for the hereditary periodic fever syndromes.
cissa
Hi Cissa, Does your son have problems with his stomach between fevers? I've been doing a lot of reading about food allergies and intolerance, and I wonder if he could have food sensitives on top of his periodic fevers? 3 weeks ago we tried taking our son off of all of his foods he tested positive for (using the atopy patch test), hoping it would help stop the fevers, but it looks like it's not working this time.

I also have been wanting to write about my son who will be 9 in August. Last February, he had a serious bout with strep (positive quick test at the ER) that took two rounds of antibiotics to wipe out. However, after that, he started having periodic fevers, usually about 26 days apart, although there have been a few times that lasted less than this and once longer. It always starts the same way: chills, low grade fever that slowly builds to around 103-104, red swollen throat (but not sore), white spots on throat and tonsils, no appetite, malaise, and headache. He doesn't usually have any other symptoms, although we're in the middle of one right now and his nose is itchy. The fevers last around 4 or 5 days and are worse in the evening than in the morning. He is normal the rest of the time, although I have noticed that his appetite has lessened since all of this began. His brother and sister never come down with this. And he's been cultured and quick tested--always negative for strep. We went to an immunologist last month who mentioned cyclic neutropenia, but when she saw his blood work (taken at the end of the last time), he was slightly anemic, had an equivocal results for Epstein Barr, and had a sedimentation rate of 27, and she seemed to think it ruled out cyclic neutropenia, although I don't think this was thorough enough. We are waiting on his cbc from yesterday to see what it looks like at the beginning of a cycle, since he started getting sick a few days ago.

Has anyone had a child who started having symptoms later than the preschool years or infancy? Thank you for your help! This whole experience has been so terribly worrying. Stacy

 
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Old 06-11-2008, 07:10 PM   #3
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ts13 HB User
Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Hi All-
Quick update---my daughter is 6 months fever free!! we had the T & A in nov. 07. our lives are completely changed--i can't believe we actually went through that every month for over 2 years. the surgery was surely a blessing for us....

 
Old 06-12-2008, 03:04 PM   #4
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ofer1818 HB User
Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Quote:
Originally Posted by ts13 View Post
Hi All-
Quick update---my daughter is 6 months fever free!! we had the T & A in nov. 07. our lives are completely changed--i can't believe we actually went through that every month for over 2 years. the surgery was surely a blessing for us....

what is t&a?

 
Old 06-16-2008, 10:59 AM   #5
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cissa4 HB User
Re: Question for Cissa4 and a Question about Son's Symptoms: could it be PFAPA?

Typically the stomach pain only comes with the fevers. The higher the fevers the more intense the pain. The allergy route has definitely been considered and ruled out. It would be nice if it was that easy, but unfortunately it's not.

cissa

 
Old 06-23-2008, 04:51 AM   #6
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Ruskingirl HB User
Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

T&A are tonsils and adenoids. Hope that helps.

 
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