Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi Kami, I'm glad you wrote again; I had this saved as a draft but hadn't sent: I'm , mom of Lily (7 3/4) in Seattle. We've had good results w/ Dr. Helen Emery at Children's Hospital in Seattle. She's the chief of Rhumatology there. It's a long haul, but Children's is very equipped for people coming in from out of town. She had diagnosed Lily " probable " some 3 1/2 years ago (we had the same virus dismissals, etc.). We have since visited NIH and had genetic testing done, and her probable diagnosis remains the same. I felt that they (Children's, and NIH too of course) did a very thorough work-up on her and took our concerns seriously. There was much they ruled out before coming up w/. My kid has episodes only on and off now (such as four months in a row, then none for the next 8) so our plan w/Dr. Emery is to return yearly unless something changes, so we're not a good source of treatment opinions, b/c she doesn't need intervention as often as many. I also had a frustrating experience w/one of the residents there (dismissive of my concerns I thought); but the last appt. I made I just specifically asked for an appt. w/Dr. Emery, not the particular resident AND Emery. The doc heading up the study now at NIH knew of Dr. Emery and felt that we were in good hands continuing care w/her. Feel free to email any other questions; I'm short on time right now but am happy to respond again later. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi Kami, I'm glad you wrote again; I had this saved as a draft but hadn't sent: I'm , mom of Lily (7 3/4) in Seattle. We've had good results w/ Dr. Helen Emery at Children's Hospital in Seattle. She's the chief of Rhumatology there. It's a long haul, but Children's is very equipped for people coming in from out of town. She had diagnosed Lily " probable " some 3 1/2 years ago (we had the same virus dismissals, etc.). We have since visited NIH and had genetic testing done, and her probable diagnosis remains the same. I felt that they (Children's, and NIH too of course) did a very thorough work-up on her and took our concerns seriously. There was much they ruled out before coming up w/. My kid has episodes only on and off now (such as four months in a row, then none for the next 8) so our plan w/Dr. Emery is to return yearly unless something changes, so we're not a good source of treatment opinions, b/c she doesn't need intervention as often as many. I also had a frustrating experience w/one of the residents there (dismissive of my concerns I thought); but the last appt. I made I just specifically asked for an appt. w/Dr. Emery, not the particular resident AND Emery. The doc heading up the study now at NIH knew of Dr. Emery and felt that we were in good hands continuing care w/her. Feel free to email any other questions; I'm short on time right now but am happy to respond again later. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Hi Kami, I'm glad you wrote again; I had this saved as a draft but hadn't sent: I'm , mom of Lily (7 3/4) in Seattle. We've had good results w/ Dr. Helen Emery at Children's Hospital in Seattle. She's the chief of Rhumatology there. It's a long haul, but Children's is very equipped for people coming in from out of town. She had diagnosed Lily " probable " some 3 1/2 years ago (we had the same virus dismissals, etc.). We have since visited NIH and had genetic testing done, and her probable diagnosis remains the same. I felt that they (Children's, and NIH too of course) did a very thorough work-up on her and took our concerns seriously. There was much they ruled out before coming up w/. My kid has episodes only on and off now (such as four months in a row, then none for the next 8) so our plan w/Dr. Emery is to return yearly unless something changes, so we're not a good source of treatment opinions, b/c she doesn't need intervention as often as many. I also had a frustrating experience w/one of the residents there (dismissive of my concerns I thought); but the last appt. I made I just specifically asked for an appt. w/Dr. Emery, not the particular resident AND Emery. The doc heading up the study now at NIH knew of Dr. Emery and felt that we were in good hands continuing care w/her. Feel free to email any other questions; I'm short on time right now but am happy to respond again later. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 My son was seen by Dr. (a woman) in the infectious diseases dept at Seattle Children's. They did the various tests for TRAPS, etc. and since he wasn't positive for those he is considered . Their follow-up is nothing exciting: I call about once a year with questions but the answers I get are vague. I think that might be because there is not a lot that is known about . We are fortunate to have a pediatrician that knew right away what he had and is helping us manage it pretty well. Good luck with your decision! Kara Tommy, age 5.5 (3 years with ) Quote Link to comment Share on other sites More sharing options...
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