Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hi Pat, tested neg. for FMF, so his ID doc. said for now...his diagnoses is . s grandmother tested positive for FMF. So I'm curious about your son with CLINICAL FMF...I would like to know what his symptoms are...does he ever have throat or lymph node issues...I can't help thinking that may have FMF too. Thanks,Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hi Pat, tested neg. for FMF, so his ID doc. said for now...his diagnoses is . s grandmother tested positive for FMF. So I'm curious about your son with CLINICAL FMF...I would like to know what his symptoms are...does he ever have throat or lymph node issues...I can't help thinking that may have FMF too. Thanks,Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hi Pat, tested neg. for FMF, so his ID doc. said for now...his diagnoses is . s grandmother tested positive for FMF. So I'm curious about your son with CLINICAL FMF...I would like to know what his symptoms are...does he ever have throat or lymph node issues...I can't help thinking that may have FMF too. Thanks,Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 Hey Cheri! Pj always had the huge lymph nodes on both sides of his neck and also the set in the back. When he was about 8 years old, one of his nodes was removed for biopsy, in an effort to find out what was wrong with him. His ped at the time swore we would find that he had either hodgkins or non-hodgkins lymphoma but that just turned out to be another one of the many wrong diagnosis we'd gotten. He may get a little red throat with episodes but never the ulcers. His biggest symptoms were the high fevers, stomach pain with nausea and vomiting, and joint pain. Pj continues to test negative for FMF but because of his symptoms and his good response to Colchicine, NIH calls it Clinical FMF. We don't really have the mediterranean background for it but NIH says more and more, they are finding the genetic disorders out side of the original origins. Pat --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Our doctor is now leaning towards FMF b/c she says my 2.5 year old doesn't have long enough fevers for it to be . My daughters fevers last anywhere from 2 to 7 days, Every 14 to 19 days apart. We are still waiting for the results back. Blood work came back with high inflammation. But that was the only thing. My question is, has anyone else heard heard this about the length of fever? My doctor wants to start her on colchicine to see if it helps. But after reading about the side effects I'm scared to give it to her. Has anyone else put there child on colchicine? Did it take fevers away also? Hali (mom to Sky 2.5, fevers since 1 year old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Hali, Our doctor diagnosed based on fevers every 3 weeks, to the day, lasting on average 3 days. However, he has required that we calendar them for three months before he will consider any type of medication. Since we only had three episodes calendared, he made her follow up three months later which we are waiting for. In the mean time, he sent our primary doctor a list of things to look for in her examination and wants her examined during every episode. he will then look at our calendar and all the doctors exams to finalize his diagnosis. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 my son is on colchicine and has never had a problem with side affects. and his fevers never last more then a couple of days . his problems are the things that come with the fever. good luck char. ************** It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Welcome and I know how you feel. ************** It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Welcome and I know how you feel. ************** It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047) Quote Link to comment Share on other sites More sharing options...
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