Periodic Fever (PFAPA), anyone???

[M2BB]

I am looking for anyone who has dealt with this, or similar. To make a very long story short, my almost 3 year old has had predictable HIGH (104+) fevers with virtually no other symptoms every 2-3 weeks since we started keeping track in Jan. Everything has been tested with no indication of anything (no UTI, no Strep, no ear infection, etc. etc.) They are calling it Periodic Fever Syndrome (PFAPA -- means it comes with enlarged lymph nodes, adenoids, sometimes cankers (he doesn't get these)) and that he'll grow out of it eventually, no clue when. No known cause or cure. It's not supposed to be genetic BUT our almost 6 year old has had virtually the same symptoms but every 4 weeks for the last 4 months (and not at the same time as his brother :P) There are genetic syndromes that also involve recurring fevers, but we don't have the markers for those, nor do the boys have the other symptoms, so...We're so confused and frustrated and ready to consider alternative methods!

ANYONE dealt with this or anything that sounds like it? Stories please (success preferably...)

TIA

[Spirit Dancer]

SO if I understand you correctly then both of you sons getting recurring high fevers at the same time for no apparent reason? And this has been happening in the last 4-6 months but no before that? If this is the case I would be almost certain it is environmental. No clue what but if they were healthy the first years of their lives and suddenly this I guess I would strongly suspect something in their environment is causing it.

[M2BB]

Well, the 2.5 year old has definitely been getting these fevers for more than 6 mos but we only really started keeping track in Jan. (previously just assumed he was fighting off viruses prior to that, but realized it was too frequent esp. as he is not in daycare and started recording the episodes on a calendar). Our older son has had unexplained fevers in the past too but we're only noticing a predictable pattern now -- and he only has them at the same time as his brother when their "schedules" happen to cross Younger DS is 2-3 weeks frequency, older has been 4 weeks. They are both very healthy in between episodes (I am certain neither of them even had a cold this past winter!), neither DH nor I get sick at the same time.

What, environmentally, would cause illness with a fever???

[californiajenn]

My dd used to have fevers every 6-8 weeks for a few years. It was maddening. I do know it correlated with other factors like asthma and eczema. Now, I'm sure for dd it was just another signal of an imbalanced gut.

Once we moved away from the awful Sacramento air, her fevers went away. Her immune system was just too taxed with the other imbalances.

[KMK_Mama]

My nephew was diagnosed with PFAPA about 2 years ago. They had been dealing with it for about 18 months when he was finally diagnosed. He was getting fevers every 2-3 weeks as well. They opted to have his tonsils out as the research they had done seemed to show a lot of kids with PFAPA had been cured after having their tonsils removed. As far as I know he never had another episode after that.

[M2BB]

Thanks for the responses!

Yes, I've read about having the tonsils out, from what I understand when it works (doesn't always), they don't know why (since it's not tonsillitis they are getting), so I'm not (yet) keen on surgery, if it may or may not work for reasons unknown. I'm also not keen on giving Prednisone, which has also been presented to us (doesn't "cure" it, *might* shorten episodes, but in some cases has made them MORE frequent, from what I've read :P). We're thinking of consulting a naturopath even just for preventative measures.

They don't suffer from asthma or eczema, and we've lived in the same place for about 5 years before this all started happening

[AeroMama7]

Hi!

I'm new to this website, but I've been looking for support for myself and my son. He is 6 and has been diagnosed with PFAPA.

Does anyone know of a support group? I can't seem to find one but I have read about them on here but no links have been posted.

I would GREATLY appreciate it!

Thank you!