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Old 01-16-2009, 07:07 AM   #1
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lotusseeds HB User
Another PFAPA diagnosis

Hi I am new here. I have a son who is 7 and for the past 3+ years he has classic PFAPA symptoms. First the ped ignored us and then we switched. Next ped thought he had sever tonsillitis and then finally listened more as I dragged my son in every 26 days with the same illness over and over again. They ran a bunch of blood tests and finally referred me to the ped. ENT who diagnosed my son with PFAPA in 5 mins. We are opting for the surgery of adenoidectomy and tonsilectomy in Feb. He is a really bright kid and loves school, but he has missed so much in the past two years that I don't want to wait for him to "out grow" his symptoms. Last year he missed 24 days of school, this does not include the days he was ill and had no school.
It has been a scary ride not knowing why my healthy happy son got severly ill every single month. It is great to finally have answers. His surgery will be on Feb 3. While I don't relish surgery, I do want my little man to get better.
Just wanted to put this out there and join the community of PFAPA parents. While I have empathy for all of you and your children, it is really nice to be in a place where people understand what your child is going through.
Today is day 2 of his latest flair.
~pam~

 
Old 07-28-2009, 10:40 AM   #2
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Re: Another PFAPA diagnosis

hello i'm new here my son has also had really had high fevers for at least the last 3.5 years he is now seven we just went yesterday to a second infectious disease doctor and PFAPA is what he said my son has, i'm doing some research on it now, but i just wanted to see if the surgery helped your son, because like your son mine has also missed alot of school, and i dont want him to fall behind.

Last edited by treytonsmom; 07-28-2009 at 11:05 AM.

 
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Old 07-29-2009, 04:42 AM   #3
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lotusseeds HB User
Re: Another PFAPA diagnosis

Hi,
My son Andy was dx'd with PFAPA and had the surgery to remove his adenoids and tonsils in Feb of '09. He has not had an episode since. It is really, really wonderful and he said he feels like a new kid! In other posts I did mention the idea of him also having facial tics and the thought then was that he had PANDAS ( strep related tics). After a neurologist's eval he said that my son has facial tics of organic origins and that the PFAPA stressed his nervous system and made the tics worse.
I still am amazed that the surgery did the trick. From what I have been reading it works in almost 98% of all TRUE PFAPA cases.
I wish you luck and if you chose the surgery, please come back and post on how your son is doing.
~pam~

Last edited by hb-mod; 04-01-2010 at 02:10 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 07-30-2009, 06:52 PM   #4
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Re: Another PFAPA diagnosis

hello! i am waiting on a few tests results from the specialist, and then we are going to have a meeting with our regular doctor, and go from there i was reading a bunch of the stories and it seems like the surgery does the trick, that would be wonderful. I feel so helpless when my son is sick, he just has no energy and it hurts to seem him like that. so hopefully we will be able to get the surgery. well thanks it makes me feel alot better knowing there is hope.

Last edited by hb-mod; 04-01-2010 at 02:10 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 09-21-2009, 01:58 PM   #5
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Re: Another PFAPA diagnosis

Hi everyone--

My son was just diagnosed today with PFAPA. Our ENT told us that the best route to take was to remove his tonsils and possibly his adenoids (depending on how they look once he's in surgery). We have been dealing with this for the past couple of years and the symptoms have been just as most of you have described--every 4 weeks he starts with a sore throat and then a couple of days into it he has a high fever for several days. He complains of a sore neck and has no appetite and occasionally vomits (due to high fever). We also heard of giving steroids but from what it sounds like on this board, is that it just band-aids the illness. If anyone has heard of a tonsilectomy (sp?) as a "cure", I would be very interested to hear about their experience. Also, does anyone know if there is any other way to diagnose this--ie, blood tests, etc?

This has been a tough time for our very active 5 year old boy. I would love to see it resolved once and for all as I'm sure all of you do with your little ones.

I'd love to get any feedback.

 
Old 10-15-2009, 10:56 PM   #6
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abhotstuff HB User
Re: Another PFAPA diagnosis

HI there. My daughter is 5yo. At the age of 5 months she started fevers every 4-6 weeks. No other illnesses - just always fevers. When she was nearly 20 months due to our mediterranean background they suggested FMF and without genetic testing started her on colchicine (despite my pleas from my research that it may be PFAPA...). Anyway - genetic tests were carried out surprise suprise the were not conclusive for FMF. An immunologist then agreed it was PFAPA. After one more episode she was fever free for the last 2.5 years... until now! She started school in January and for the last 2 months has had 2 episodes. This time the symptoms are more apparent. As a baby there were no ulcers, stomach pains, etc... Now she has an ulcerated throat - very similar to tonsilitis (but all tests came back negative for tonsilitis, glandular fever etc...) fevers for 5-7 days, sore legs etc... I have red a number of sights that suggest tonsillectomy can cure PFAPA. My doctor suggested this may be the avenue we may have to take. I believe prednisone can help with the fever at the time but have also read that it can reduce the duration before the next episode. There are no bllod tests that I have heard about that can diagnose PFAPA.
My daughter has been struggling with this - it is tough on her - but I think it is just as tough on us cause we can't seem to do anything to help.

 
Old 10-17-2009, 05:53 AM   #7
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lotusseeds HB User
Re: Another PFAPA diagnosis

I talked with my doctor about predinsone when my son was having his episodes. It looks as if it works short term. Most kids do outgrow PFAPA, and some have it return as an adult so, consider keeping your child on a steroid for 5+ years and then the possibility of having the disease resurface for your child as an adult and having to deal with it again with all of the issues that can happen as an adult. In addition, you will still have to deal with missed days of school, unless you home school. Have you been to an ear/nose/throat pediatric specialist yet? I would go there and get his/her opinnion. One studdy shows that 99% of all PFAPA cases are in complete remission after tonsillectomy and adenoidectomy. My computer is on the fritz right now, and I can't find the article or abstract.
Good luck, I hope you find a solution that works for your child.

Last edited by hb-mod; 04-01-2010 at 02:11 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
Old 03-24-2010, 07:24 AM   #8
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suvie333 HB User
Re: Another PFAPA diagnosis

Hi, just wondering how your son is doing after his surgery. Is he PFAPA free now? I have an 8 yr old with the same problem for over a year now; considering the surgery but afraid to put him through that in fear of it not working. He too has missed 16 days of school so far this year and is falling behind his peers. I think this is way harder on me than him. Do you know why they took the adenoids too?

Thanks for your input
Susie in CT

 
Old 03-31-2010, 09:36 PM   #9
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Re: Another PFAPA diagnosis

I want you and everyone else out there with a pfapa .child to listen to me. My baby girl was diagnosed at 2 months with this "disease". We went through hell for the next 3 months of her little life. One day, my sister who is a nurse, came across an article and sent it to me- it read that pfapa had a cure. PFAPA is WHEN THE ATLAS AT THE BASE OF THE BRAIN AND BEGINNING OF THE SPINE ARE TWISTED! A woman had told the world about her child being cured merely going to a chiropractor and getting her child adjusted several times. The older the child, the more times it may take to get the neck to stay where it is supposed to. Make SURE the chiropractor uses the special instrument for the atlas, and that they are made aware of this condition. Long story short, I took my baby in during a 105 degree fever, within an hour her fever had dropped. NO MORE EPISODES FOR 6 MONTHS UNTIL 3 days ago when she fell while learning to walk and hit her head, causing her neck to displace again. 105 degree fevers again. I took her into the chiropractor, and immediately the fever ceased, no more fever, no more crying, pain, ANYTHING!!!! YOU DON'T NEED SURGERY!!! IT IS ALL A LIE, AND THE MEDICAL INDUSTRY KNOWS IT! It makes me mad how many children and babies have to suffer when it is easily fixed. I hope this helps you. Get to a chiropractor right away and get your child cured!!! < edited >

Last edited by hb-mod; 04-01-2010 at 02:12 AM. Reason: Please do not post personal information, such as name, telephone or email address. Thanks!

 
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