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Old 05-16-2006, 06:49 AM   #1
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omerbilhan HB User
PFAPA (periodic fever)

My son, who is 21 months, has periodic fevers since one year (15 times). Finally we are close geting diagnosed. The doctor says that there is a 99% chance that our son is either PFAPA or FMF.

I understand that in case of PFAPA, steroid like medicine is given. I would be very happy, if someone whose child has similar illness can tell me more about this. How frequent is steroid given ? Any side effects ? Is is helpful ? What other medicine is provided ? What are the results in general ?

Also can anyone who has similar experience tell me what are the real diagnosis differences between FMF and PFAPA? Thank you for the help?

Omer

 
Old 06-04-2006, 10:17 AM   #2
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Re: PFAPA (periodic fever)

I am so glad I found this. My daughter is 4 and has been getting recurring fevers for a little over a year. They are always over 102. Last night it was 106.6!!! What could be causing this? She only gets a fever. No swelling anything or vomitting or runny noses. Just high fevers. Obviously her body is fighting someting. Isn't that why people get fevers. What could be causing this and what kind of tests can be done to find out what it is.

 
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Old 06-04-2006, 01:07 PM   #3
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claflamme HB User
Re: PFAPA (periodic fever)

There is a thread on this here. I am pretty sure it is under this topic.
Check it out.Or search it.
Good Luck

 
Old 06-04-2006, 01:09 PM   #4
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Re: PFAPA (periodic fever)

It is under the rare diseases board

 
Old 07-05-2006, 07:32 AM   #5
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Re: PFAPA (periodic fever)

My son is 4 1/2 and has been having fevers for the last year and a half. He was just diagnosed with PFAPA. We were given steroids to start with his next episode. He is due anyday. It has been six weeks. He usually gets them every 4-6 weeks. It usually starts with him complaining of a fever and pain around his penis. Along with the fever and headaches, he gets white pus pockets in his throat and sometimes, mouth sores.
It would be nice to speak with someone who is going through the same and get some feedback. Please reply

 
Old 07-19-2006, 03:59 PM   #6
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Re: PFAPA (periodic fever)

My daughter is going through it now...the past year she seems like she's getting fever every 5-6 weeks....Today it's peaked at 104.7....She just had a small pnemonia 3-4 weeks ago....was finally over it and now today she had x-ray and it's still there hence the high fever....i gave her tylenol as usuall and it came back down to 100 but now after 4 hours its back up to 104.6...I gave her more tylenol and she through it up....i'm losing my mind....Please lets keep staying in touch...this has been an awful past year for my poor baby...Last year she also had febrile seizures with the temp but now it seems those have gone....so far.....

 
Old 07-20-2006, 04:15 AM   #7
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Re: PFAPA (periodic fever)

Hi everyone for a while I thought my 2 yr old had this because she was getting fevers so often between 102-105. It seemed like every month. But since she turned 1 yr old she also had some other issues like not eating much not gaining alot of weight ans some constipation problems. We just recently found out that she tested + for Celiac Disease by a blood test and now she had the endoscopy done and we are waiting for the results. But it can cause alot of fevers also because it is an auto immune disease.
Just wanted to give a different perspective. I hope all your children get better soon.

 
Old 09-17-2006, 10:09 AM   #8
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Re: PFAPA (periodic fever)

My 3 yr old daughter has just been diagnosed with pfapa. I have been told that children with this condition often benefit from having their tonsils removed. Has anyone else had this suggested to them? We saw 5 experts from around the world at Great Ormond Street last week, and were told that this is an unpleasant, but relatively harmless condition, despite the nasty symptoms. Has anyone else noticed a fever after vaccinations? Did you have to have them done in hospital? No-one has suggested prednisone, just long term anti-inflammatories. Is anyone else in this position? I would love to hear from people in a similar situation.

Last edited by Vanya; 09-17-2006 at 10:13 AM.

 
Old 05-08-2008, 08:23 PM   #9
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Unhappy Re: PFAPA (periodic fever)

my daughter is 17mths she was just diagnosed with pfapa after 6 months of high fevers and over 8 seizures. she gets fevers mostly every 2-3 weeks mostly just pharyngitis and sinus infections. We basicly live on the edge of our seats with Alexa, one of the times she had two seizures in one day one resulting in lasting 45 mins and getting her in a coma and intubated. Its just crazy that it has taking this lond to be diagnosed the hospital was terribly clueless I was the one the requested to see the infectiouse desase dr after showing up three times in the er with crazy fever. She is currently on cimetidine daily as well as prednisone for when the fever strikes and phenobarbital for seizures. This is crazy I have never heard of this before Im so happy to find other mothers goign through this please get back to me with your advice or any questions I need all the support I can get.

 
Old 05-10-2008, 05:58 PM   #10
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Re: PFAPA (periodic fever)

I actually posted a few years ago. On few posters ago too. Awaiting my daughter celiac biopsy results,They were positive. I was sure that was the cause of her fevers, I was wrong. Because now she is 4 1/2 yrs old and she is still getting them as high as 105.2 she was tested for fmf and hyper Igd Syndrome the Infectious disease dr is looking into pfapa or marshalls syndrome it is a periodic fever still but it is fevers that come every 14-28 days or so. And my daughters are very strange sometimes they take a 4-6 month break then they will repeat all over again every 23-34 days for the next 9 months or so this has been occuring since she was 1 year old, Nobody has been able to figure it out yet. The dr wants me to just chart he fevers and detail symptoms until august then call him and let him know how it goes.
It is very frustrating,As it must be for all of you. I have gotten what everyone else must have gotten when they go to the dr for a fever is it must be a virus. But every month almost the same time each month.
I hope all is well with all the kids.

 
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