It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-12-2008, 01:15 PM   #1
Newbie
(male)
 
Join Date: Jul 2008
Location: Santa Barbara, CA, USA
Posts: 3
huntergreen HB User
Question Pfapa

My 21 year old daughter has been getting fevers pretty regularly (about every 4 weeks) that hover between 102-105 for about 5 days. Basically that is her only symptom, other than just being generally lethargic and/or irritable. Otherwise, she almost never gets sick.

One time her temperature was almost 107 and we took her to the emergency room after giving her Motrin. By the time we got there it was around 105. There are some 6 doctors in her pediatric practice and she has seen them all. Every time, they say it's just a virus and that it is common for kids to get sick this often. They even tell us not to be worried about a fever of 105 if she seems ok otherwise!

Never, have they been able to tell us what type of virus it is. They suggested it may be Roseola at least 4 times already. Our main pediatrician even said he didn't believe her temperature was ever almost 107 & that our thermometer must be wrong (we've tested it and it's right).

Finally, we insisted that they dig deeper because we don't believe this is normal for a child to get sick so often & with such high fevers, especially since none of the other kids at her day care were getting sick.

I had been web surfing and found info about Persistent Fever Syndrome & asked our doctor if this were a possibility. He said he had not heard of it. Nevertheless, he referred us to a rheumatologist at UCLA medical center. The rheumatologist has sent her blood out to be tested and we are waiting for the results but she suggested (without our prompting) that it could be PFAPA.

We are not of Mediterranean descent so that pretty much rules out FMS. We have never noticed any canker sores and the doctors have never remarked about her throat being inflamed or her lymph nodes being swollen. This brings me to my questions:
  1. Do the other symptoms (canker sores, pharyngitis, swollen glands) have to be present for it to be PFAPA?
  2. How is it detected?
  3. Can it be detected through blood tests?
  4. Are there other types of PFS that do not include these types of symptoms.
  5. Is it contagious to other children (at day care)?
I see a lot of experience on these boards. Hopefully someone can give us some answers.

 
Sponsors Lightbulb
   
Old 07-18-2008, 12:24 PM   #2
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

My daughter was diagnosed a few months ago with PFAPA after 8yrs. of searching on why she was getting fevers every month. Many doctors many antibiotics pushed. We noticed her fevers started around 10mo. In the beginning symptoms wer stomach pain, vomiting, fever. As she got older she would complain of joint pain, headache eyepain now she gets it all along with swollen lymph nodes ulcers on back of throat. Fevers last 3-4days. We are trying Prednesone to see what happens during fevers at this time. There is no blood test for PFAPA. It is not contagious. There are other Periodic Fevers that can be tested for Hyper IgD syndrome,Familia Medditerianian Fever google PFs will show more.She was tested for PFs blood work showed nothing so PFAPA fit her symptoms after other blood work was ruled out. Also CRP levels were checked during fever episode they were very high. Not many docs know about this syndrome yet, its not really being studied yet in the USA.

 
Old 07-18-2008, 03:08 PM   #3
Newbie
(male)
 
Join Date: Jul 2008
Location: Santa Barbara, CA, USA
Posts: 3
huntergreen HB User
Re: Pfapa

So, is it just diagnosed by process of elimination?

 
Old 07-18-2008, 03:37 PM   #4
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

Yes,after you find a Doctor that believes in Periodic Fevers he will do the blood work for the different fevers. Then he went through all the Periodic Fevers and their symptoms and that is how we got are answer after eight years. PFAPA is one of the fevers they say that they could grow out of, but I also heard of Adult PFAPA in which they had alot of fevers when they were little it went away in teen years then came back in 20s. You know your child better than anyone. Hang in there. Once you have a name behind the fevers it takes aload off your shoulders, even though we dont know the outcome. How old is your daughter?

 
Old 07-19-2008, 04:07 PM   #5
Newbie
(male)
 
Join Date: Jul 2008
Location: Santa Barbara, CA, USA
Posts: 3
huntergreen HB User
Re: Pfapa

She is 21 months. This has been going on since she was about a year or so. Our pediatrician really just kept ignoring it until we pushed. Then he referred us to UCLA medical center & the doctor there is doing tests. She doesn't have the mouth sores, sore throat or swollen glands but she certainly fits the pattern. It would be nice to have a diagnosis that we can at least treat.

 
Old 07-19-2008, 06:29 PM   #6
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

In the begining my daughter did not have mouth sores or swollen glands,but when she did get a fever it looked like she had a stiff neck. Even though their little they know how to cope with the pain and as they get older and more verbal it is unreal when they tell you how much they hurt when they get these fevers. I still carry my daughter around the house during these episodes because she hurts so much just to walk(very bad headaches).

 
Old 07-19-2008, 06:35 PM   #7
Junior Member
(female)
 
Join Date: Jul 2008
Location: Wyoming, MN
Posts: 10
walli6 HB User
Re: Pfapa

My daughter is also 21 months and her fevers also started around 1 year. Her first and highest fever was 106.5. I already posted on this site and explained that my doctor pursued bladder infections that never turned out to be bladder infections. I told her during the last fever episode that we needed to try to figure this out and she sent us to the University of Minnesota to see an infectious disease doctor. That was all it took, it was the first thing he suggested and it makes the most sense. Blood work is being done to rule out other possibilities, but I really think it's PFAPA. Her symptoms are always the same - high fevers between 103-105 (that we can not get lower than 101-102 with round the clock tylenol and motrin) that last for 3-5 days. This last time she pointed to her head and said "owie" several times a day. She also pointed in her mouth and said "owie", but she is getting some big teeth right now too. I never saw any mouth sores. She also falls down and bumps into things a lot when she is fevering. The fevers started coming about every three weeks in the spring, before that they were a little farther apart.
Any of this sound a little too familiar?

 
Old 07-20-2008, 09:58 AM   #8
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

The thing i feel the worst about out of all this experiance is all the antibiotics that I have given her because the doctors didnt want to look much further into her fevers, telling me she will either grow out of it or theirs nothing they can do for her. I even tried a Flexologist to get rid of her monthly fevers, all those teas and root seal I had her take nothing worked. I think about all them weeks and months she would cry not to take the medicine because it was yucky, but the doctors kept saying it will work. So if you think its PFAPA stick with it and find a doctor who will listen A few years ago when we found a doctor who would do other tests on her besides CBCs, her arthritis levels showed high we took her to a rheumotologist he said no arthritis. Her allergy levels showed high took her to an Allergist no allergie.These fevers make weird things show up then when you go to the specialists there negative.

 
Old 09-08-2008, 11:01 AM   #9
Newbie
(female)
 
Join Date: Sep 2008
Location: Baltimore,Md USA
Posts: 5
deunkad12 HB User
Smile Re: Pfapa

Hi, I am going thru the same thing my daughter is 2 and on April 7,2008 she had a routine Hernia repair and then a week after she started with the fevers.She was admitted to the hospital on the 14th , and stayed there for 10days with them playing the guessing game, of what was wrong, but they flat out said it was not from the surgery but we were released on the 24 still with a high fever.Then after that I just started treating them at home until July when it had come back for the 4th time in 4 months,Then I took her to the Er and they said oh its just a viral infection and set us home, then on her 5th day of fever I took her back and was told the same thing, now mind you while all of this is going on my child is not eating barley drinking and just plain old tired and lifeless. Well the episode in August I took her back to the ER and was told the same thing but I came to work and asked some of the doctors and they told me to take her back to the hospital were she had the first episode, and I did and she was admitted agin for a week, but they still don't know they just gave me paper work on PFAPA and she goes twice a week to have blood drawing to see her CRP markers thru out the month before her fevers accure, and then when her first one it this month give her the predisone and see what happens if nothing bring her strait back to the hospital to be admitted. So at this point and time I am in need of any advice I can get on this!!!!!!!!!!!!

 
Old 09-08-2008, 11:04 AM   #10
Newbie
(female)
 
Join Date: Sep 2008
Location: Baltimore,Md USA
Posts: 5
deunkad12 HB User
Re: Pfapa

Yes it does and my daughter has sores in the back of her throat , but only when she has the fevers other than that she is fine.

 
Old 09-16-2008, 06:56 PM   #11
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

deunkad12, Hows your daughter doing? If you have any specific questions I can try to help answer them. Im not a doctor but i went through 8 yrs. of this before an I got a diagnosis. There was many times when my daughter got her fever and i never took her to the doctor because nobody would help figure out what was wrong with her and I also thought they were going to think I had MunchHousin for bringing her in every month. Some doctors do not believe in PFAPA.

 
Old 09-17-2008, 06:55 AM   #12
Newbie
(female)
 
Join Date: Sep 2008
Location: Baltimore,Md USA
Posts: 5
deunkad12 HB User
Cool Re: Pfapa

Thanks well right now she is fine, hasnt been sick yet for September, but she still complains of a stomach ache,I still haven't figured that one out yet.I really dont know were to start, but the doctors gave me predisone for when the fever starts.To give to her and if it goes down then just keep giving it to her for 3 days, if not bring her back. But they are also testing her for Lupus, because it runs in her fathers side of the family.

 
Old 09-17-2008, 07:03 AM   #13
Newbie
(female)
 
Join Date: Sep 2008
Location: Baltimore,Md USA
Posts: 5
deunkad12 HB User
Re: Pfapa

I want to ask you does your child still suffer from this,and my daughter her fevers can last up to 12 days at a time, is his common, my doctor had never heard about it until I went to work(I work for the Health Dept.here in Maryland)and asked one of the Peds doctors here and showed her all of the paperwork from each visit to the ER and her first hospital stay(which was 10 days) and she came right out withmaybe she suffers from, PFAPA but I really want to know what causes it in some kids and not others I really thought that it was from her surgery but they keep telling me it's not from that.Well the doctor from work gave me the info and I took it back to the hospital and then they said oh, that might be possible, then when we was discharged that was what the put as her diagnosis. She has to have her blood drawn twice a week is this normal?

 
Old 09-17-2008, 07:29 PM   #14
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

My daughter still suffers from this every month. The doctor said usually they grow out of this between the ages of 13 -17 yrs. I also heard there is an Adult Pfapa.When my daughter was little she also would get very bad stomach aches between episodes tthat would make her double over. As she got older the stomach pain wasnt as bad but she would vomit with each episode. She went through alot of blood tests it seemed like they were taking the same ones all the time CBC's. Finally they sent us to an Immunologist who checked her CRP levels during one of her episodes and thats what tipped him off to PFAPA. She was also tested for IgD and Familia Med. Fever.

 
Old 09-17-2008, 07:36 PM   #15
Junior Member
(female)
 
Join Date: May 2008
Location: Tennessee USA
Posts: 23
francis66 HB User
Re: Pfapa

12 days seems like a long time, I would check into other periodic fevers also, there are others that fevers due last longer. PFAPA usually goes 3-5 days. But like I said these fevers do weird things that show up on blood work then it is negative after a second time of testing.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
PFAPA -what? walli6 Rare Disorders 48 06-17-2011 12:31 PM
Is it PFAPA or another auto inflammatory disease? Help4Son Rare Disorders 69 06-10-2010 07:33 AM
Another PFAPA diagnosis lotusseeds Rare Disorders 8 03-31-2010 09:36 PM
Possibly PFAPA syndrome? arrowrug Rare Disorders 0 10-18-2009 02:18 PM
PFAPA (periodic fever) omerbilhan Children's Health 9 05-10-2008 05:58 PM

Tags
pfapa syndrome



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



robertb (3), Stepper (3), ladybud (2), melly88888 (2), cerse (2), bdettis (1), clancy (1), suezq0863 (1), HealthBdMember (1), kovena (1)

Site Wide Totals

teteri66 (1162), MSJayhawk (991), Apollo123 (890), Titchou (826), janewhite1 (823), Gabriel (757), ladybud (737), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 11:26 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!