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PFAPA

danitorgersen
0 Recommendations

does anyone know any information about the PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis)?? Or is anyone dealing with this syndrom with one of there kids?? PLEASE HELP!!!

Explore topics in this discussion:

Tylenol Surgery Motrin PFAPA Sleep apnea Fever Colchicine Pain TRAPS Prednisone Aphthous stomatitis

15 replies

NORDGeneticCounselor

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/

Adwyer

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

danitorgersen

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.. :(

Adwyer

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

waldenstud71

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.

shanjunic

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.

ladyblueppd

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.

AnnaLeeR

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!!

care1978J

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.

jashrafi

It took us a very long, exhausting time get a diagnosis for our daughter. As some have stated, it takes a while to notice a pattern to this mystery illness. She had all the classic symptoms many of you have mentioned above: fevers every 14-18 days, lasted for 6-7, wouldn't eat, gagged and threw up when trying to swallow, complained of stomach pains, etc. Before diagnosis, the ped mentioned a few times she had large tonsils but didn't persue it. My husband and I became her warriors and finally found a doc who thought he knew what was wrong with her. It was, indeed, PFAPA. There was no way I was going to go the steroid route and I wasn't going to wait til it decided to grow out of her body. She was two at the time. We saw an ENT and he said she also had obstructive sleep apnea. I always just thought she was a bad sleeper (like NEVER slept for more than an hour or two consecutively) but apparantly the PFAPA and the size of her tonsils and adenoids made the tonsil/adenoid remove our best option. For sure it would take care of the sleep apnea, and hopefully the PFAPA too. I am happy to report that she had her surgery on July 24th, 2009 and is now fever free! She had one episode right on schedule about 10 days after her surgery, so we were devasted thinking it didn't work. That was her very last one. She put on weight super fast and now i have the chubby-cheeked, big-bellied baby I longed for! She eats everything in sight (she used to only be able to swallow baby food - even at 2 years-old) It was a long, difficult battle, but I certainly urge people to consider the tonsilectomy. The recovery was BRUTAL but well worth it to see my daughter thriving for the first time, perhaps, in her entire life. For so many months, people thought I was crazy or over analyzing her situation. Even my ped didn't think it was that big of a deal. IT WAS! If anyone here wants more information from me on our particular case or docs, feel free to contact me.

bumkin

my heart goes out to you all. my daughter is now three and has had fever episodes from birth . she has had about 30 admissions some lasting 9 days. she has had utis and has scarring of both kidneys. she has had numerous blood work done and various ultra-sounds, x-rays dmsa and three lumber punctures mostly done in the first 18 months. she has seen a specialist in london who looks at periodic fevers and has had dna banked for genetic testing. she has been tested for hids traps and fmf so far but were inconclusive. she is now waiting for her tonsils and adenoids to be removed as they are now looking at pfapa. she is currently having episodes every two weeks and we can prdict when one is coming. she has a temp of 40 and above she has rigours and mottled skin before a spike she then goes goose pimply and very lethargic. she vomits and has very loose stools but is always constipated through an attack. she has enlarged tonsils on most attacks which are covered in white exudate but there is never any strep or staph infections present.she complain all the time of having a bad belly and its swollen at times. she has bloods done each time which always show raised crp and wcells and sometimes raised lymphocytes and neutrphiles but no cause is ever found other than mouth ulcers swollen lymph nodes stomach pain and she doesnt drink or eat much for about three days. she sees a consultant every few weeks and i ring him or he rings me if need be. i spend every day on the internet looking for answers as they have said that she doesnt have the main fever syndromes according to the blood work but i have read a number of times that a child of her age can still present with these syndromes even if bloods say different. she is currently on colchicine 250mcg twice daily tremethoprim 2.5 ml at night and predisolone 15mg daily when an attack starts for up to three days. that was fine when she fevered every 28 day but now it is 14 days it is worrying me giving her so much meds. more worrying is colchicine how safe is that and is this effecting her kidney function who knows? we go to see an immunologist aswell every 3-6 months and they are very helpful too. she had a few months on anakinra injections but continued to fever so they stopped it but maybe she wasnt on it long enough. injecting her was upsetting every day but it had to be done.if anyone has any extra info that might help us not that i think there could possibly be any more out there i would be very grateful as we feel old timers now after all this but that doesnt mean we know it all. if anyone would like a chat that would be nice. my child has had over 30 admissions in 3 years how many more will she need before they make a clear diagnosis. for now they are saying its marshalls syndrome

bumkin

you are quite right no one on this earth can relate to these attacks unless they have to deal with it them selves.friends told us on xmas eve at 1min to midnight oh its only a temp strip her off but when they saw her vomiting having a rigour and lifeless they then realised how sick she could get and quickly it came on. so we ended up in hospital from xmas eve until the 30th december and she was very unwell. thats why im glad ive found this site as you have all experienced the same problems one more thing have you been told to do a diary im on the end of year two and our immunologist was amazed and how helpful it has been take daily temp(highest of the day)eating, toilet, behaviour, sore throat as believe me when you look at these as closley as i have even the daily things you note done have a pattern not just the days when an episode is going and it helps you more to predict an attack . at the moment we are every 14 days

rrinke2

I am so glad I found this site. My little one is 16 months old and I fear we are just beginning. Right now she has fever episodes up to 105.9 and we just met an ID dr this week. He wants to see her on day 3 of a flare up but there is no doubt in my mind that she has PFAPA. She always gets a white pussy throat with her fevers (shes had 4 since May) and the strep test is always neg but dr always put her on antibiotics anyways. She was even hospitilized for 5 days with an iv and iv antibiotics in June. That was very scary and she didnt even need all this medication. We struggle every time with keeping her hdrated, though. She hates juice and hates drinking anything when she has her fever. We even went back on the bottle at night just to keep her out of the hosp and iv. Any tips?

bumkin

hi as you were saying that each time she has a temp they put her on antibiotics we have the same problem. why give a child all these meds if they dont have answers? that is the question we always asked. but the reason for this we were told this is because with pfapa there is no definite diagnosis and due to the many serious infections out there children with these conditions have to be monitored carefully in case an infection is masked by what we think would be a normal fever attack to us. as time goes on and they get to know your child and the way they react they will hang back sometimes with meds. we were taking her to hospital on each attack as she was so ill and the usual routine applied( poor things) which was asked for by the cons. it is a pain but at least you know things will not be missed. now we dont have as many admissions as predisolone helps us stay at home. but constant pred............ is that a good idea too.......................

bumkin

hi care1978j if you would like a chat feel free to contact me as my daughter i 3 years old and has had all these problems since birth and sounds similar to your situation.

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