Guest guest Posted December 23, 2008 Report Share Posted December 23, 2008 When I needed support you all were there. I vented mostly out of anger that this fever every month really put my son out, and down. I needed comfort and you responded with a sympathetic ear and gave me a wealth of information that I asked for. My son at 5 years old had then diagnosis genetically as R92Q a mild form of TRAPS. It resembled Pfapa in every way. He had all the symptoms of Pfapa and a few of TRAPS r92q. He is now 8 and its been one year since his tonsils and adnoids where taken out and he has been fever free!!! Yesterday was our last and final visit to the Rhemetology Doctor. He said 95% of all Pfapa cases are cured with the surgery. And well the R92Q is not always considered TRAPS. I had fevers as a little girl and had my tonsils out and was fever free. Because my son was so young 5, they wanted to wait till he was 7... It was my decision to get them out, there was nothing wrong with them... I feel for all of you that are going through this rocky road. Its causes alot of heartache... We are on to another adventure with my son, ADHD. Hes started Medicine for this 6 months ago... a heart break for me again knowing he will need to take meds maybe the rest of his life and have problems with staying focused. Similar to the pain I had with the ...the cimedine worked and so did the predisone... he was fever free when he took these meds. It broke our heart knowing we may need to give this to him also the rest of his life. I guess its always something...that hurts...hopefully there will be a cure...besides meds. Merry Christmas to all and have a wonderful New Year! Mom to Stone with cured Pfapa symptoms! Quote Link to comment Share on other sites More sharing options...
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