Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Thank you so much for the advice. I've left one message today, but will definitely keep trying. The tests were done at Gene Dx, so at least that is a start. We have another baby on the way as well, so I'm even more eager to figure out if this is a genetic condition. She doesn't seem to quite fit the typical description of FMF, but at this point she isn't fitting the typical desciption of any condition, so I guess anything is possible. And she's been on so many different medications, its hard to tell what her symptoms would be if she wasn't on anything. Again, thanks for the advice - its so helpful to hear from others who have had similar experiences! am (mom to Layla, 19 months) > > > > > > Fran, I have a question for you (or anyone else) regarding NIH. My > > > 19 month old daughter has been having fevers on and off for almost a > > > year now. Originally, they thought it may be , but then she had > > > a really bad fever which did not improve, and so they started > > > thinking it may be systemic onset JRA. But she has not yet shown any > > > arthritis symptoms, as far as we can tell (she's only 19 months, so > > > too young to tell us if she hurts). Anyhow, we just found out > > > yesterday that she has tested positive for one FMF gene mutation. > > > They need to find 2 mutations to diagnose, but since they don't know > > > all of the mutatations at this point, they said the test results were > > > inconclusive. Our doctors are not convinced that its FMF based on > > > her symptoms (she's never had vomiting or digestive issues during an > > > episode). We are going to try out the FMF medication to see if she > > > reacts. But I'm wondering if Dr. Kastner sees patients outside of > > > the study? I know she is not old enough for the study, but I'm > > > wondering if there is a specialist that can give us more insight. We > > > are seeing Rheumatology and Infectious Disease specialists at > > > Stanford - great doctors, but they don't have the same level of > > > experience with FMF as someone like Dr. Kastner would. Anyhow, I'd > > > appreciate any advice that you may have. > > > > > > Thanks for your help! > > > am Norton > > > (mom to Layla, 19 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009 I plead "[geezer mode ON] " ......Les.....sorry about the type in your name. You know who you are. J. Pedersen DC Quote Link to comment Share on other sites More sharing options...
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