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Hello,

I'm so glad I found this group! My son is 19mos and has been

fevering for about 10mos now, but we recognized the pattern just

after he was a year old. Luckily, our pediatrician took our

concerns seriously, knew a LITTLE about Periodic Fever disorders,

and referred us right away to an immunologist (Dr. Alpon in

Springfield, VA). I'm very grateful that we have been able to cut

to the chase. Currently we are awaiting results of genetic testing

to find out if anything genetic is going on. This weekend we had a

spinal tap, which showed slight inflammation (not too bad) and a

slightly elevated sed rate. Luckily nothing too alarming, but still

no answers. The doc mentioned possibly doing a bone marrow test,

but I am VERY weary of that and have to do more research and talk to

him more before we jump to that test, the spinal was bad enough.

After reading a lot online, talking to a doc at Children's in DC, I

really think my son has . He fevers every 20-24 days-like

clockwork, lasting 4 days. He never has any infection present at

the time and his fevers typically spike to 105, the nighttime is

especially brutal. I suspect there is other pain involved because

he does quite a lot of screaming before the onset of a fever and

this last time, he has been screaming at night hysterically after

the fever has subsided. I suspect bad headaches or stomach pains.

I have so much to say about what we have been experiencing, but

frankly am losing the energy. We're exhausted, stressed, feel

helpless, and sometimes feel like we are at the end of our tether.

Between episodes a black cloud looms over, just knowing a week of

hell is just around the corner. I have a professional job that I

only work part-time, but I'm finding it very difficult to keep up

even with that. The thought of this going on throughout my son's

childhood is devastating. I'm glad to find that there are others

out there. I'm tired of hearing well meaning people suggest that my

son is cutting teeth!

Looking forward to looking through everything posted here. I want

to become an expert on this topic and make the most informed

decisions for my son as possible.

Northern Virginia

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