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Old 02-05-2008, 04:49 AM   #1
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gramstiles HB User
Question PFAPA (Periodic Fever Syndrome)

Hi, My grandaughter has Pfapa since she was 18 months. for 6 years we had no idae what was wrong. At 8 years old the fever stoped and now that she is 13 the pfapa is back. It came back last year with veried symptoms and not this year it is back in full force. She is being seen by a doctor in new york city. Help Does anty one have a child that the pfapa came back?

 
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Old 02-05-2008, 04:51 AM   #2
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

it willl not stop the fevers if she has pfapa

 
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Old 02-08-2008, 05:15 PM   #3
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Gramstiles,
My name is Noelle and i live in NY. I have been desparately seeking a doctor who is familiar with PFAPA. My husband is 25 and has been living with a fever every three weeks since hes an infant. I know this is much to ask, but i would be EXTREMELY greatful to have the doctor that your granddaughter goes to in the city. I have been searching and searching for a doctor who knows a lot about PFAPA in NY and i havent found any. I am really desperate, and i appreciate all the help i can get. Thank YOU!

 
Old 02-08-2008, 05:19 PM   #4
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Oh and Gramstiles, my husband did have points in his life where the fevers were not as often at all. He went a few years with not getting sick that often. Now it is back and worse than ever, maybe because hes older it hits him worse. Dont know if that helps.

 
Old 02-13-2008, 08:46 AM   #5
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ts13 HB User
Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

3 months fever free!!!
highly recommend the t&a!!!!!!!!!!!!

 
Old 02-19-2008, 08:06 PM   #6
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

NoelleE, If you don't mind.........I'm curious as to the progression of your husband's symptoms....what are they, how severe, etc..... I understand if you feel that's too personal. It 's just that my two and a half year old has been diagnosed with PFS, and it's hard to find info. on what to expect. Most reports say it's unknown!!!

Last edited by cissa4; 02-19-2008 at 08:06 PM.

 
Old 02-28-2008, 07:11 PM   #7
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Noelle, my daughter is 4 and she's had fevers since she was 18 months. To hear your husband, as an adult, probably has it is interesting to me. I always wonder what's going to happen to my daughter as she gets older. Did you husband get his tonsils out? There is a doctor at the National Institute of Health in Maryland who's life study is PFAPA. You do have to apply to see him. His name is Dr. Kastner. We applied to see him back in September but haven't heard anything yet.

 
Old 02-28-2008, 07:17 PM   #8
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Cissa, My daughter is 4 years old and we finally got diagnosed with PFAPA in December. I have a hard time believing the diagnosis. I'm interested to hear your daughter's symptoms. my daughter has had fevers every month like clockwork lasting three days for two and a half years. No other symptoms besides getting extremely thirsty. We've been to immuniology, infectious disease, and rheumatology. Her blood work has come back with an elevated SED rate, elevated CR protein. Now we're on the prednisone which is making her fevers come every 7 days. I'm reading a lot about tonsilectomy? I'm interested if you, or anyone out there reading this, has had their child's tonsils out and if it stopped the fevers or eventually they came back.

 
Old 02-28-2008, 07:18 PM   #9
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Did it work??????

 
Old 03-01-2008, 09:16 AM   #10
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kmob1220 HB User
Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

My son was also diagnosed w/ PAFPA in December and has fevers every 5 1/2 weeks like clockwork. He has very high fevers (104-105) for 5-6 days. His lymph nodes in his neck get very large and the only thing that ever comes back in his blood work is a high sed rate as well. We are interested in the T&A as well. Can anyone please give more insite in this?

 
Old 03-11-2008, 07:00 PM   #11
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Hi Noelle! Thanks for the reply! Has your husband been considered for the hereditary periodic fever syndromes? Unlike the PFAPA the hereditary ones (TRAPS is an example of one) are not outgrown and can be diagnosed as adults. Unfortunately, our doctor is not actually leaning towards the PFAPA with my son. This means it will be something that he will battle with his entire life. I was actually chatting with a lady on another group the other day that is 31 and has TRAPS. Of course, I know it's all easier said than done since there are so few doctors that recognize the symptoms and know enough about it to diagnose them. I don't remember if we're allowed to share doctor's names on here, but we used to live in Cleveland. (Just moved a year and a half ago). It was our family physician that first brought up the PFS idea for us. He was an absolutley awesome doctor. We found it rather ironic that it took 18 months of testing to deliver us the diagnosis that our family doctor originally gave!!! Anyways, he works through University hospitals , but our rheumatologist here in Texas told us that the best PFS doctor is at University. If we're allowed to give dr. names I could give it to you. That might at least give you a start. I might be able to even ask our dr. here the name of the dr. he was referring to at University.
Cissa

 
Old 03-11-2008, 07:15 PM   #12
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Hey Michele,

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

 
Old 03-15-2008, 08:23 AM   #13
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Ruskingirl HB User
Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Quote:
Originally Posted by michele34 View Post
Cissa, My daughter is 4 years old and we finally got diagnosed with PFAPA in December. I have a hard time believing the diagnosis. I'm interested to hear your daughter's symptoms. my daughter has had fevers every month like clockwork lasting three days for two and a half years. No other symptoms besides getting extremely thirsty. We've been to immuniology, infectious disease, and rheumatology. Her blood work has come back with an elevated SED rate, elevated CR protein. Now we're on the prednisone which is making her fevers come every 7 days. I'm reading a lot about tonsilectomy? I'm interested if you, or anyone out there reading this, has had their child's tonsils out and if it stopped the fevers or eventually they came back.
My niece had extremely high fevers (104,105,106) every other week for 3 1/2years. Finally after my sister said enough, she went to an ENT who recommended trying a tonsillectomy. I could go into alot more, but the fact is, it helped!!! She has been fever free for 6 months and is putting on weight, and not missing preschool or church like she used to. It something to look into if you haven't already. Good luck.

 
Old 04-22-2008, 05:00 PM   #14
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

I have not been on this site for a long time. My son started his fevers at the age of 3. We went through all the same tests with no real answers. We moved to Niagara Falls where our physician was adamant about doing cultures (we had been treating with antibiotics for years as our friend was a doctor and one look in his throat immediately said strep) they all showed up negative. We were sent to a teaching hospital and the infectious disease doctor confirmed what we expected...PFAPA. We started the Prednisone but the episodes came every 2 weeks (but at least he could get to school). She did not believe a tonsilectomy would work but I insisted on seeing an ENT. This doctor knew nothing about PFAPA but was willing to do the surgery. In the meantime we saw a Rheumatologist who said that was the best route. Post tonsilectomy, it would appear that the PFAPA was gone but recently my son has been getting very sore throats with a low grade fever. Last throat culture was negative but we did another one today as the symptoms are back. Has anyone who went the tonsilectomy route find that there seem to be a slight reoccurence or that the symptoms have changed a bit. I thought we were done with this but now I am not sure. My son is 10 years old.

Last edited by reddykitty; 04-22-2008 at 05:02 PM.

 
Old 04-23-2008, 08:26 AM   #15
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Re: quick update on my daughter - PFAPA (Periodic Fever Syndrome)

Sounds like it is PFAPA. My son was having fevers exactly every 4 wks to the day. No other symptoms other than the sore throat. Prednisone works except brings on the episodes more often but within a couple of hours of taking it, fever is gone. Had tonsilectomy which I thought worked but not sure as he is now having sore throat fairly regularly but with low-grade fevers. There are other symptoms now so could just be virus he keeps getting. It is really worth considering.

 
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