Check out this website. It has a ton of information about Periodic Fevers Syndrome. I found it incredibly helpful.
http://www.ohsu.edu/ohsuedu/academic/som/p ediatrics/clerkships/upload/Fever-Syndrome s.pdf

I'm both thankful and saddened to find so many parents going through the same worry. My daughter (2.9 yrs) has been experiencing recurrent high fevers since she was an infant. However, her fevers are accompanied by other symptoms (i.e. vomiting, lethargy and stomach pain). This happens every 4-6 weeks. Standard blood panel, urine and allergy tests have come back normal. Her doctors have explained it as viral but I know something is up. No one in her class at school is ill and we never seem to catch what she has (including her infant brother). Her symptoms last 2-4 days (lethargy hanging on for longer) and fevers running as high as 106. Like many of you, we have trouble keeping her temperature below 103 without consistent dosing of motrin and tylenol. On one occasion she maintained a fever for 12 days! She continues to grow and behave as a typical child in between these episodes but I'm still worried. Any advice, similar stories, expeiences would be greatly appreciated!!!

Wow, thank you to all who have responded to this. My daughter has been sick since last August.(She was 7 months) Started as double ear infections, then no air in her lungs. We did breathing treatments 3 times a day for 3 months. Then in February she got extremely sick. High fevers, breathing problems again. In March she was diagnosed with pneumonia. Every Wednesday her fevers would spike (105). Then we got to every 3 weeks. And since then we have maintained every 3 weeks, high fever. We gave up on taking her to the dr each time,because each time we were told viral. No one NO ONE around her was ever sick, even at daycare. She was the only one. Finally at her 18 month check up they decided to run an immunology panel. It's suppose to take 3 weeks and next Monday we are suppose to find out results. But just like clockwork, we are experiencing the high fever, and slight rash on her face. She was slightly warm yesterday, slight rash developed last night and by this morning full blown fever. Spoke to our Ear Nose and Throat doctor yesterday. (She had tubes put in at 10 months) She said that if the immunology panel doesn't give any answers, removing her tonsils etc might be something to discuss. (even though she has never had strep throat etc) We just want answers. I am so sorry that so many of us have this common, but I am so thankful that we are not alone and perhaps one of us will find something that we help someone else.

This is in response to "kyliesmom113's" recent post. My daughter has had some questionable respiratory issues as well. She had pneumonia when she was 2 yrs. and has been to see an ENT because they suspected sleep apneia. The sleep study test didn't show anything abnormal, but they suggested we reconsider a tonsilectomy in a few years because her tonsils are enlarged. She also had strep when she was 9 mos. Evidently this is very unusual as my pediatrician said, "She is the youngest patient I have ever treated for strep." Maybe there is a link... Here's hoping!

To "feversinNJ," thank you, thank you, thank you! The article was HUGE! This is our daughter to a "T". Even the little stuff, "uncommonly energetic" between episodes, etc. I have a great sense of relief, though I'm trying to keep things in perspective. I'm anxious to show our pediatrician and make an appointment with a pediactric ID doc. Thank you again... Katie

You're very welcome Morgiesmom! I just wish I had found this information years ago myself. I had my daughter's blood and urine tested for the entire panel discussed in the paper last Friday while she had a fever. I am hoping for the results on Monday. Then we will go to the Infectious Disease Specialist who handles this syndrome. I want her tonsils and adenoids out! I have wanted them to do it for years but they keep rejecting it. I had this gut feeling that it would help; just like the gut feeling I had that there was something more seriously wrong with her than "just a virus". The doctor my daughter now goes to worked with Dr. Long in Philadelphia and he said she's amazing. If the Infectious Disease Specialist does not give us the results we want, I'm heading to Philly! There is no way I'm going to put my daughter on Prednisone if I don't have to. Best of luck to you all and I'll post again when I find out more.

Unexplained fevers & now stomach aches,

My daughter of almost 3 yrs has been getting unexplained fevers and soft stools for a couple of months now and it had never been exlained. Just the usual "must be viral" brush off. Now she is getting tummy aches & fevers that come and go like the wind. One day she's fine and the next she's got 102 degree fever, then it goes away again and comes back very shortly after. It's a roller coaster. We brought urine & stools samples to the hospital and the urine just came back totally negative and we're still waiting on the stool sample. It seems like this kind of thing isn't as rare as I thought. I'll report back if we actually get a real answer. I don't like antibiotics but I've heard of child enemas. I believe in them totally for adults, but have never tried it with her, but would in a minute. It's a great immume booster and clears out lots of junk in the system.

I can't believe how many others are out there like my daughter. She is 21 months old now and has a fever at least once a month for the last 7 months. Most very high 103 or higher, but in June of this year spiked over 106 and ended in the hospital with a kidney infection. She has kidney reflux and has UTIs but docs aren't convinced that these are UTIs she's having every month. She's on a daily dose of abx for the reflux and still gets the fevers out of no where with no other symptoms. Just getting over an episode now. Usually last 3-4 days. We see the infectious disease doc on Monday, just wondering what to expect there, if anyone has seen one?

I am a mother to a 28 month old son, and have been dealing with this since he was about 10 months old. Same ol story from docs high fever= virus. I can't swallow that for a answer, and glad to hear none of you are either. This almost feels like a unspoken epidemic after reading all of these stories. Gosh do we need answers, Real answers. I am interested to know some answers to a few questions I have to see if there is any similarity in our children.... My son was born 6 weeks early,(he had no problems thank god) he has a red slightly raised red bump(almost like a mole) on shoulder since birth, we live by a body of water, and live in Kentucky, he does not tolerate milk, and had acid reflex as a infant. If any similarities let me know please!! Also.... My son did have anoids and tonsils removed 6 months ago, did not help...Sorry. We have also seen a immunologist who ran lots of blood work and said his immune system was great

OK, so here's a follow-up. After speaking with the Infectious Disease Specialist on the phone prior to the appointment to confirm that they were who I would need to see for this, I plunked down a $30 co-pay just to be told they couldn't help me and I had to see a Pediatric Rheumatologist! Why did they tell me to see them then?! UGH! What a waste of time and money. She also wanted me to have my daughter take a series of blood tests (get this) twice a week for 6 weeks. Is she serious?!?!

I promptly called the Pediatric Rheumatologist at Hackensack University Hospital in NJ and got an appointment immediately. Dr. Suzanne Li was amazing. She spent so much time with me and knew about every single study that I mentioned (and brought copies of). She is very interested in this syndrome and is pushing to get a genetic study done. She thinks my daughter is a candidate so that is pretty interesting. The only thing I have left to do now is to have one more blood test about two weeks after an episode that is not near another. Since every third episode is a five week break, we will do it then. She already has one lab when she was full blown and one just after she ended one. Both had elevated Sed. Rate and C-Reactive Protein levels. She wants to make sure these go down when she is not having an episode. And she wants to see her one more time during an episode. As it just so happened, she was getting an episode right before our very eyes during the visit. What a coincidence! Not at all like bringing the car to a mechanic!

I'll write back when I have more! If any of you live in NJ, you might want to visit Dr. Li. Perhaps you could also be a part of the study.

My partner and I have a son (now 18mo) who has been getting fevers every two weeks for the last 6 months, and like most of you we have been told "it's a virus" by his GP. His fever this time went to 40.5C (105F) and we've had a night trying to keep him cool and comforted. My partner is off to the GP (again) and at last they're doing some bloods. Urine and all the other screens that have been done have been okay, except for one instance when they found citrobacter freundii in a mid-stream sample which cleared up after using Bactril.

The link posted by feversinNJ was fantastic... really good info and we're hoping to take it with us when we get to speak to his pede. As I am of Mediterranean lineage and my partner is of Irish lineage, perhaps there may be a genetic link as pointed to by the article.

Anyway, I wanted to say thnx to all of you who have posted about your kids... we could find very little info here (Brisbane, Australia) and my partner and I were going crazy thinking that somehow we were not doing the right things. As our son Zachariah is in family day care three days, we were thinking he got the fever from there... but no-one else was ill there, so we started thinking that perhaps it was us! So now we both feel relieved that we're not crazy to think there's something else apart from some virus.

Thnx again to all!

Just an update. We had our follow-up appointment with the Rheumatologist after being on Colchicine for 4 months. We were pretty happy with the results (fevers still occurred predictably, but the last two episodes were much lower in temperature--the last one never went much above 38C instead of consistently at/above 40C--and the last episode was delayed by two weeks). The specialist believes we can do better, though and has increased the dose to the full .6 mg/day (we were on half-doses before that). Her goal is still to have no fever episodes at all - wouldn't that be amazing? We go back in another 4 months. Will keep you posted.

I also have a grandson that is two and is show the same signs that the rest of your children have. I do have a questions for the blood testing you are having done. Has anyone tried to have a CMV(cytomegalovirus) blood test run? They say infants can get it from their mothers but I have also heard Kids getting it playing (and eating) in dirt when they are young. pjbc

like everyone here i have been through this with my daughter who is going onto five now. it started when she was one and a half she develeped rsv then lots of antibiotics followed , then the high temperatures i thaught i was going mad over and back to the doctors at one stage i demanded they do something that i wasnt moving her temp was sky high she was limp in my arms and the doctor was tellilng me her chest was clear i took her to the er thanks to a different doctors opinion and she was diagnosed with pneumonia . appologies followed but my daughters ordeal didnt end there after being on antibiotics for a week they did a chest x ray and she was the same the antibiotics did nothing. then they did lots of tests for exotic diseases and finally settled on asthma she has a permanent snotty nose . the asthma medication was terrible it made her pale and sickly and no better i gave up on the doctors and went with my gut instinct i went to my local chemist and baught a sinus wash now every morning since she was four i wash her sinuses out never had a temp since all we have now is lots of snot sorry every morning that gets washed down the sink instead of into her chest hasnt had an antibiotic for a whole year. when she picks up bugs now she seems better able to fight it off and sometimes sleeps it off . i have no faith in doctors they seem to rely on blood tests period.

Well I can't say that my daughter has had this for a lengthy amount of time, nor since infancy. She is 2.9 years and had 5 fevers every SATURDAY for 5 weeks recently. A different reason every time according to the Pedi, but ALL viral. They seem to keep getting higher but shorter as the time goes on with these fevers. She does have chest congestion, coughing, running nose now although a few first times with the fever it didn't have that. Now she has an ear infection that won't go away . Being that she's on Antibiotics if there was an infection wouldn't they help? I suppose different antibiotics do different things.

Karlene - what is a Sinus wash? Is that like saline spray or something? I'd be interested in that.

pjbc - Have you had one run on your grandson? What were the results? I wonder if a CBC (complete blood culture) includes that type of test..or do you know it's a separate special test to be requested?

Just another personal thought on all of this. After reading everyone's posts, something tells me that Antibiotics or taking drugs might actually cause the fevers to get worse or contribute to this syndrome?? Maybe I'm off, but what if it's a vaccine that's causing this syndrome as another thought? Too much of modern medicine seems to be ruining our children's bodies...Not trying to be an advocate here, but so many more things popping up in our children's lives concerning their health that no one can seem to explain.

My son's first episode as we call them started when he was about 2 months old. He would begin by screaming for hours about 1-2 days prior to a high fever setting in and then no other symptoms. He had test after test with no explanation. He is now 4 years old and just had an episode about 1 week ago. I don't even take his to the doctor anymore because they poke and pry to tell me nothing. Does anyone have any idea what this can be caused by? He has "episodes" about 3-6 times a year.