Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 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 Quote Link to comment Share on other sites More sharing options...
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