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Old 01-23-2001, 02:09 PM   #1
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bdettis HB User
Question PFAPA or Periodic Fever Syndrome

My 3 year old son has been diagnosed with PFAPA. I would like to talk with anyone who is familiar with this syndrome.

 
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Old 06-06-2007, 06:35 PM   #2
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Re: PFAPA or Periodic Fever Syndrome

My son was diagnosed with PFAPA over a year ago. He started with very high fevers, and was at the doctor once a month for a year. Every time they told me it was a virus. I finally got fed up and took him to Duke Medical Center, where the infectious disease doctor there finally diagnosed him with PFAPA. He is given prednisolone every time he has a fever. I did some research and in a lot of the research they said that tonsilectomys were successful in more than eighty percent of children with PFAPA had shown no signs of it again. My son just had a tonsilectomy last thursday. They did a pathology report on the tonsils and it showed signs of Bacteroides. I am still looking all of this up, we just found out today. I will try to keep you posted as I get new info.,I am praying that this tonsilectomy works.

 
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Old 06-07-2007, 09:51 AM   #3
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ts13 HB User
Re: PFAPA or Periodic Fever Syndrome

wow! how old is your son?? i am anxious to see if the tonsillectomy works. my 2 yr old is experiencing the same thing. monthly high fevers with tonsilitis-always a virus as well. we started the prednisolone yesterday when i mentioned pfapa to the dr.
we have been battling this monthly for well over a year. how did they finally diagnose your son? any advice would be appreciated.

 
Old 06-09-2007, 09:03 AM   #4
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Re: PFAPA or Periodic Fever Syndrome

Quote:
Originally Posted by spikar View Post
My son was diagnosed with PFAPA over a year ago. He started with very high fevers, and was at the doctor once a month for a year. Every time they told me it was a virus. I finally got fed up and took him to Duke Medical Center, where the infectious disease doctor there finally diagnosed him with PFAPA. He is given prednisolone every time he has a fever. I did some research and in a lot of the research they said that tonsilectomys were successful in more than eighty percent of children with PFAPA had shown no signs of it again. My son just had a tonsilectomy last thursday. They did a pathology report on the tonsils and it showed signs of Bacteroides. I am still looking all of this up, we just found out today. I will try to keep you posted as I get new info.,I am praying that this tonsilectomy works.

 
Old 06-09-2007, 09:12 AM   #5
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Re: PFAPA or Periodic Fever Syndrome

Hello,

After doing extensive research and many doctor's visits, I am 100% positive that my 5 year old daughter has periodic fever syndrome and a tonsillectomy will be the cure. She has had the same symptoms for about 1 1/2 years. It happens every 24 days. Symptoms include fever, vomitting, sore throat, tiredness, chills, no appetite, diarrhea, body aches. These bouts last between 2-3 days. Her doctor suggested she see a specialist and be put under to have a "scope" done. I wasn't thrilled with that idea. We are seeing an ear/nose/and throat doctor this Monday, June 11th. I am also praying that this will be the cure for her. SPIKAR...please keep me posted on your child's condition. I would love to continue corresponding with you. It sounds like we have been going through the same thing. How did you get the doctor to take out your child's tonsills? I am bringing tons of correspondence to our visit on Monday.

 
Old 06-20-2007, 12:05 AM   #6
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sarah7407 HB User
Re: PFAPA or Periodic Fever Syndrome

My daughter, age 6 was diagnosed today with PFAPA. I hope the steroids work for her. She has missed a lot of school from this. I am just so glad to finally have some clarity on what was making her so ill so often.

 
Old 06-21-2007, 03:30 PM   #7
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Re: PFAPA or Periodic Fever Syndrome

Hi, I'm in the Cleveland, OH area. My son was officially diagnosed with PFAPA at 11 months (he's 20 months now). He had been suffering with the fevers since he was 3 months old. I started tracking them on a calendar at 7 months and my (awesome) pediatrician kept great records too. When we finally got to see a specialist (first infectious disease and then rheumatoid), they were ready to take us seriously because of those records.

Some of my son's symptoms (sore throat, mouth sores, terrible breath, skin texture changes) didn't show up until later. Did anyone else experience this?

The doctors tried the prednisone, but it made the fevers come more frequently. He is now on cimetidine (tagamet) and is doing better. It's not cured, though. He still gets a fever, but it is much lower (101 tops, instead of 105-106),it doesn't even last the usual 3 days, and they come 6-8 weeks apart instead of every 4 weeks. The doctors believe the tonsilectomy will take care of it, but my son is really too young for one. I guess they are complicated for toddlers. I was also told he may grow out of it.

PFAPA is pretty scary, especially with an infant! Maybe we all need a support group...

 
Old 06-22-2007, 09:57 PM   #8
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Re: PFAPA or Periodic Fever Syndrome

My daughter usually starts with complaining of a sore neck, which is from the swollen lymph nodes, her tonsils get red and very big. She then fevers and vomits, has the mouth sores but they do not seem to cause her pain, she also complains of headaches often.

 
Old 06-24-2007, 07:53 PM   #9
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ts13 HB User
Re: PFAPA or Periodic Fever Syndrome

well, i'm back. my daughter started her fever/sore throat again today. the last time i took her temp. it was 103.6. i started tracking her illnessess exactly 16 months ago. however, she is not consistent with an exact # of days between episodes. at the beginning of the month when she was sick (june 6), we did 2 days of the prednisone. i read that this sometimes helps them get better faster, but shortens the time between episodes. anyone find this to be true??
i guess we will try and get in to the ENT tomorrow. he wanted to see her when she was ill.
would love to keep in touch with the rest of you as to what works, etc.
she hasn't actually been diagnosed with PFAPA, but it's the closest answer to her symptoms..................

 
Old 06-24-2007, 10:14 PM   #10
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Re: PFAPA or Periodic Fever Syndrome

Hello, I have a daughter that is 7. Her name is Mackenzie. She has been suffering with high fevers, body aches, sore throats, mood swings(big time), and many behavior changes. She was diagnosed with lyme When she was almost 3. She was on the normal antibiotics a few times and all of her symptoms still remained. The Dr.'s kept telling me that it was nothing to do with the Lyme. I on the other hand did not believe that. I found a ped. lyme specialist in Conn. He tested her and said she still had active lyme. 3 and a half years ago he diagnosed her with Babesia. In between this her primary sent me to a infectious disease spec. She said it was PFAPA. The lyme Dr. treated her for an entire year with Mepron and Zithromax. ALL of her symptoms were gone during this time. When she stopped the meds all of the symptoms came back.
She now went to a ENT specialist and he believes it is her tonsils. I am so confused. he wants to take them out. I am unsure of what to do. Iwould hate to have her go through the surgery if that is not the problem. Does anyone have any input? Please help, It has been almost 5 years of going through this. Thank You Tina

 
Old 06-25-2007, 06:34 PM   #11
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ts13 HB User
Re: PFAPA or Periodic Fever Syndrome

well, we saw the pediatrician today and he seems to think we are dealing with PFAPA also. in the past, all the dr (it's a large practice) she saw believed it to be a virus, just a case of her being two........
we have an appt. with an ENT on thurs.
i'd be willing to consider taking her tonsils out if they believed that would "cure" her....
i'll let you know what he says.

 
Old 06-25-2007, 09:24 PM   #12
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Re: PFAPA or Periodic Fever Syndrome

I know before I took my daughter to the infectious disease spec, her primary doc was thinking it was time to remove her tonsils. She never mentioned PFAPA, I had never heard of it until the infectious disease doc told me and she matches that to the letter. I will not have her tonsils removed until I am positive that would be beneficial to her. I hear it works for a lot of PFAPA kids.

 
Old 06-29-2007, 03:29 PM   #13
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Re: PFAPA or Periodic Fever Syndrome

did the pred work?



Quote:
Originally Posted by ts13 View Post
well, i'm back. my daughter started her fever/sore throat again today. the last time i took her temp. it was 103.6. i started tracking her illnessess exactly 16 months ago. however, she is not consistent with an exact # of days between episodes. at the beginning of the month when she was sick (june 6), we did 2 days of the prednisone. i read that this sometimes helps them get better faster, but shortens the time between episodes. anyone find this to be true??
i guess we will try and get in to the ENT tomorrow. he wanted to see her when she was ill.
would love to keep in touch with the rest of you as to what works, etc.
she hasn't actually been diagnosed with PFAPA, but it's the closest answer to her symptoms..................

 
Old 07-03-2007, 09:43 AM   #14
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ts13 HB User
Re: PFAPA or Periodic Fever Syndrome

YES! i was trying not to give her the pred. this time around. i wanted to let the ENT look at her throat during an episode. however, before bed, her fever had spiked again to 104.5, she still hadn't eaten (because of her inflammed tonsils) and i gave in. i gave her the 3/4 teaspoon. within an hour, her fever broke and she was eating normally the next day. the ENT saw NO signs of tonsilitis 2 days later. so...........he doesn't seem to think it's viral, but had never heard of PFAPA.
we are going to just keep tracking her episodes and the frequency. however, the pred. DOES seem to stop it in the tracks. i don't want her to be on steroids forever, but 3/4 tsp. is really not that much.

 
Old 07-03-2007, 11:05 PM   #15
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Re: PFAPA or Periodic Fever Syndrome

Thats good that it worked and worked fast. Did it make your child really hungry or aggressive at all?

 
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