PFAPA

• By NORDGeneticCounselor
• Posted June 24, 2009 at 8:47 am
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This discussion has information about periodic fever syndromes:

http://www.inspire.com/groups/the-childrens-inn/discussion/periodic-fever-c onventions/?reply_sort=desc

This group may also be of interest:

http://groups.yahoo.com/group/PFAPA/

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• By Adwyer
• Posted June 24, 2009 at 11:57 am
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Hi,
I am so sorry to hear about your kids having issues. In doing a little looking around I found that surgery has some benefits. Has anyone discussed this with you? This is what I found.
http://www.orpha.net/data/patho/GB/uk-PFAPA.pdf
Thanks,
Aleck

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• By danitorgersen
• Posted June 24, 2009 at 9:21 pm
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yes they have... but they wont do it because she is too young and she wont drink and she will get dehydrated.. so i guess it is just a long waiting game.. :(

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• By Adwyer
• Posted June 25, 2009 at 9:08 am
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What is the sex/age of your child? Do they have any other problems (genetic) besides this one? How frequent are the symptoms? How long do they last?
Do they have any that don't fit the PFAPA or do they have any missing?
Thanks,
Aleck

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• By waldenstud71
• Posted July 25, 2009 at 12:59 am
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Hello, I feel your pain my daughter had PFAPA for 3 years, I was in Italy when she caught it, I am also a researcher. My daughter had frequent stomach pains, and could not go to the restroom, the fever was every 11 days or so and it went on for four or five days in which she barely ate, she started to loose weight, basically on those days they wont eat at all so you are probably worry, make sure to keep her or him hydrated at all times, and if the fever gets higher than 103.5 or 104 go to the hospital,...the only thing that will help is antibiotics...but this is only a temporary thing to make the fever go away. My daughter went through 14 hospital visits until someone told me she had PFAPA, one of the doctors recommended PREDNISONE but after reading online....I found out that a lot of children that are given prednisone finish with stomach ulcers and worse...some even liver failure after long treatments,...the tonsils taken out also will not work. This is what worked for us...I gave her fruit and plenty of it (grapes, and strawberries) this not only regulated her colon (which because of PFAPA ) they tend to get constipated...but also kept her hydrated and make her eat a little bit more....the disease will go by itself althought for us took almost 3 years the first year is the worse, after that the symptoms tend to extend and dissapear. Given them tylenol and motrin will work if you alternate them, although when they dont eat that will make their stomach hurt also...my daughter was 10 months old when she got it and she was almost 4 when it went away. Too much tylenol and motrin do not work...they just give you that because the doctors dont have right now an explanation for what causes PFAPA although it is thought to be genetic...I am actually doing my dissertation on that I am an epidemiologist by training...we also did a lot of praying.

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• By shanjunic
• Posted August 20, 2009 at 11:10 pm
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Hi,
My 14 month old was diagnosed with PFAPA yesterday(: Last fall she began running fevers in the 105 range. Our pediatrician began running tests in June and she was ordered to see a pediatric specialist earlier this week after her SED rate came back at 90.

How old is your child? We were told to expect the pattern of fevers until she is around 5 years old. From what I read, it was only coined an illness in the late 1980's and there are still doctors who disagree that it is a valid illness. I am happy that it finally has a name and she has a diagnosis but I hope that they are not missing something else since there is no specific test for Pfapa.

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• By ladyblueppd
• Posted September 9, 2009 at 6:58 pm
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my 5yoa son was dx with pfapa when he was 2. the past three years we have been dealing with fever every 30 days for 3-5 days. in the begining he was on a 14 day cycle for 5-7 days each year the cycle has been stretching out i can tell everyone that you as a parent are alot more frustrated than your child. They learn when they are going to get sick and they just deal with it. tylenol and motrin due help reduce the fever so they are more comfortable. having a fever is not harmful to their bodies I have been assured by many DR's. We tried cimetdine, (didnt work) steroid which just aborts they cycle but they get it back a week later. (no use) and i have concedered having his tonsils removed ( but my son is scared) however that is his best chance of improvement ( it has helped 9 of my dr's paitents) My sons symptoms are swollen neck and glands white spots on his tonsils leg pain stomach pain and headaches along with a fever. this is because PFAPA is not a disease or an illness but a deregulation of the immune system. causing SED rate in blood to increase and inflamation in there bodies. I am trying to convince my son to have a tonsilectomy but he refuses even though it will help if not cure him for a period of time. (some kids are fever free for years) PFAPA should spontaniously go away usually around puperty age however I know a college student that still has a cycle every 4 months.

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• By AnnaLeeR
• Posted September 15, 2009 at 12:00 am
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I just found this website yesterday and posted my discussion. I have a 1 1/2 year old that they believe has PFAPA. She is high 105 fevers every 3 weeks like clock work and seems to be in pain (stomach region). They last about 7 days. She was given a medication during the last episode and it has shortened the duration to 2 weeks till next onset. Motrin and Tylenol barely seem to help by lowering her temp to 102-3's. She has been dealing with this for 7 months now and is under the care of 6 specialists. They keep making her get blood test 1-2 times a week and say it will take months to diagnose officially. I would love to talk to you. I want to find someone out there that is going through this with a child. Its just SO hard!!

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• By care1978J
• Posted October 5, 2009 at 12:54 pm
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I am the mother of a 23 month old girl who hasn't been diagnosed with anything yet. She's been getting sick since she was a very young infant but it has taken me a while to realize that there's a pattern to it. It just seemed like she was always getting sick no matter what we did. Her symptoms are fevers up to 104, no appetite at all, very poor sleeping (like close to none), getting very clingy, occasional vomiting, paleness, puffy face/eye area, and night sweats. We think she has a sore throat (she'll put food in her mouth, chew it up and spit it our instead of swallowing) and that her body hurts, but she is too little to be specific in what is bothering her. This last time she's been sick (now actually) she's said that she hurts a few times, but when we ask her about it she can't explain. In the beginning we figured out that she has some problems with gluten, so we were blaming her sickness on not being careful with her diet and somehow letting gluten into her system. I was so careful it made me feel awful each time she got sick, I just couldn't understand what she had gotten into her system. After I started to chart her illness on the calendar I realized that she was sick for 1 week, then healthy for usually about 24 days, but this varied a little. Her high fevers usually lasted about 2 or 3 days and then she was just sick. She can't possibly be getting gluten every three weeks when we are so careful. When I mentioned the regular intervals to our doctor she seemed to take me a lot more seriously then she had previously. My daughter looks healthy when she's not having an episode and is growing great and is very verbal for her age, so no one was really concerned except for my husband and me. People would say things like "babies get sick" and act like it was an ear infection or collick or just a fussy baby. No one's baby got sick as much as mine. Now that I've noticed the pattern to her fevers we are getting more tests done. The first round of tests has only shown an elevated c-reactive protein level, which just shows inflamation, so just means that she is actually sick with something. Hopefully that will give a little more credibility to my claims. Now that I have an idea of what's wrong I just want to get it all figured out, the testing takes for ever. They want us to get another group of tests done when she gets healthy, but she seems to get sick before I can get them done. I would love to talk with someone else who has a young child who has the same issues we're going through. When I talk to my friends about my daughter being sick, I know they can't relate "again?". I wouldn't be able to unless I was experiencing it first hand either.

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