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Old 11-01-2008, 06:05 AM   #1
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Join Date: Nov 2008
Location: Reedsville, WI USA
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Carmensita31 HB User
Pfapa

I don't have a question but a story for all parents to hear. My son is 12 and has just been diagnosed. We have been struggling for 5 yrs to find out what has been plaguing him. We have seen rhumatologists, neurologist, and I cannot count how many times we have been to his pediatrician. He was a pretty healthy boy with only occasional fevers and swollen glands until about 7. He was a great sleeper from birth so I thought nothing of him wanting to sleep more. He contracted Mono from his older brothers friend at 7. I thought he was going to die on me. He did get better, that was 1 or the 2 times that he actually had strep throat, but he never seemed to regain his weight that he lost during that episode. Then they body aches and pains started to the point that he would cry. So we proceeded with this game for 2 yrs and then started taking him to the doctor more often. The told us it was a virus almost every single time. He was rarely put on any antibiotics and neither did anyone suggest anything else was wrong. About 2 yrs ago he came down from his room and I thought I was looking at an 80 yr old man with arthritis. Every part of his body hurt and as ususal he had a fever. I became worried because my mother has rheumatoid arthritis. We started down the path of specialists. He became so discouraged that he mentioned many times that he would rather die than to continue like he was. Of course he would get better but never like he used to. I remember the great days he has had in the past 5 yrs, they are few and far between. I finally requested for him to be seen by an ENT because of his cobblestone throat and swollen glands. We weren't in his office 5 minutes and he listened to his symptoms and diagnosed him. He had is blood test results and new by them he was able to tell that he had PFAPA. He is now going to take his tonsils and adenoids out in 1 week and 4 days as my son states. We can only pray that this will be the answer. I found some research from 2006. The study was done on 27 children from 2004-2006. 26 of them were relieved of all symptoms except for that one child. Maybe we are hoping for more than should be expected but when you have such a distraught child, you will do anything for your child. He only wants to be normal like his friends. If you have a child that is older and still having symptoms, please be as encouraging as possible and never give up. Go see your ENT or any other doctor who is willing to keep learning through their years. I will put another blog out here after we see the results.

 
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Old 11-03-2008, 11:47 AM   #2
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Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

Please keep me updated on your son after his tonsils are taken out, please. Reading your story sounds what We went through since my daughter was 10 months old, She is 8 1/2 now finally diagnoised in June from an Immunologist. She had her Adnoids taken out when she was 5 due to her Pansinusitus. It never helped her fevers. We talked to the doctor about tonsils coming out its still up in the air. Good Luck

 
Old 12-16-2008, 05:03 AM   #3
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mandyhubert HB User
Re: Pfapa

I am responding to the woman with the 12 year old son -- I too have a 12 year old son that was finally diagnosed with PFAPA just about 4 months ago - the label of "PFAPA" does nothing to actually help the problem. He's still suffering every 35 days without fail. We too have done the whole gamit of doctors - pediatricians, immunologists, infectious disease specialists - nothing helped. We tried Tagament 800 mg. daily for 2 months - nothing.. I even went the holistic route after years of trying so many things and nothing worked. As I write this note, my son is upstairs drinking Gatoraid with 104 and we're in another cycle of this insanity. My son, Steven, had his tonsils out 2 years ago - they swore that was the ANSWER -- well he was fever-free for only 2 months, then it started again full force. We also did the steroid route -- no better, although it helps temporarily, it does quicken the cycle. Rather than 35 to 42 days we are now at 28 to 30 days. He is frustrated, missing school, missing sports, etc. - it's unreal that NO ONE can find something to help. My doctor wants us to see a rheumatologist next. Honestly, I will play along, but I have no hopes of anyone really "curing" this. But if anyone has any doctors or any positive experiences with something or someone actually helping, please please please let me know!!!
Mandy - Howell, New Jersey

 
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