Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Fran, I have been to the NIH site, but how do you get started to fill out the paper work to be seen at NIH for testing? His Id Dr. wants us to see ENT Dr. and have his tonsils taken out. Would you think the tonsils need to be removed? Diagnosed w/ in 2-06 after 2 yrs. of fevers.He was on Cimetidine and Dr. just took him off it, he said it was not working. He still takes Orapred when fevers start, it breaks the fever within 3 hrs. His cycle is fever every 2 wks., but last wk. he had 3 fevers in 9 days. Dr. has done extensive testing but he said everything points to . So, what do you think about the tonsils? Does it take the fevers away for good? Kim -Devin's mom Kermit, WV. <gt4990@...> wrote: just a quick note since we are just settling back in at home.... after a long week NIH has taken Breana off Enbrel for a trial period(Scares the hell out of me but I understand). They have replaced it with Singular. They are concerned about the neuro effect we have been seeing and need to make sure that it's not being caused by the Enbrel. We are only doing this as a trial and are not stopping the Enbrel deliveries since we had just gotten one she wasn't due for one for 2 months anyways! gotta run tracy Singulair Fran Fran, As you know, we are still using prednisone on the girls fevers. I've heard a bit about Singulair but not sure how it works. Is it a daily dose like the cimetadine? Or just during attacks? Any side effects? I understand it is an immune regulator like cimetadine? What kind of results does it have? Do the fevers spread out or are they actually less severe? We haven't been back to the NIH in two years, but maybe it's time to touch base with them again. Thanks Fran, Quote Link to comment Share on other sites More sharing options...
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