Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 It took us about 6 months to get an apt. Tracey Mom to Maddie, age 6 Brent, age 9 League city, TX On Monday, May 23, 2005, at 05:10 PM, Ramzi B. wrote: > How long did NIH call/contact you after they received the paperwork ? > > Been waiting for 4 weeks so far. > > <gt4990@...> wrote: > Hello, > > Just wondering if anyone else out there is going to Dr. KAstner on Aug > 16th??? > TRacy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 How long did NIH call/contact you after they received the paperwork ? Been waiting for 4 weeks so far. <gt4990@...> wrote: Hello, Just wondering if anyone else out there is going to Dr. KAstner on Aug 16th??? TRacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Hi, BReana has already been seen by Dr. KAstner. This will be a second visit for us. HE has been following BReana closely since her November crisis. The first visit took us many months to get, this was 2 years ago. Re: NIH visit How long did NIH call/contact you after they received the paperwork ? Been waiting for 4 weeks so far. <gt4990@...> wrote: Hello, Just wondering if anyone else out there is going to Dr. KAstner on Aug 16th??? TRacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Dont cancel this time.. they would love to see him during a cycle!! NIH Visit Hello everyone, It has been about a month since I have checked in. I will finally be going to NIH for our first appointment on August 14 - Monday. They will be seeing both my children. Evan is 6 and has had fevers since one month old, and was just diagnosed last month. She is eight and started with her fevers one year ago in July. I did not want to believe it, she was my healthy one! But she has been cycling every 4-6 weeks with fevers lasting 6 days up over 103. She had NEVER fevered that high before, so during her last fever we had blood work done which showed the same markers as did years ago. We saw Dr. Feder out of CT Childrens and he agreed to send her to NIH as well. He has seen over 100 patients and is so informative. We discussed her history - including 3 cases of strep in the past year, which I thought would exclude her from being diagnosed with . I told him that when she went on the antibiotic for strep, her fever would still last 4 more days. It was like the medicine did nothing for her. That is when he told me this: He said you could test a whole 2nd grade class and over half of them could test positive for strep. It is a common thing found in the throats of schoolage children, but if strep was causing the fever then the antibiotic would help within 48 hours. Because 's fevers continued beyond the 48 hours would show that something else was causing the fevers. I never knew this!! This is the 3rd time we have scheduled an appointment at NIH, the past 2 times we had to cancel because Evan fevered right before the appointments and had to go on prednisone. I think we sheduled this one right - I hope because I booked the flight already!! Will anyone else be there at this time? Prayers to everyone, Tara Mom to Evan age 6 and age 8 Connecticut Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2009 Report Share Posted July 14, 2009 I had my intro visit at NIH for medical history, adjustment of meds and scheduling of tests. Metropolol to be dropped this week, with HCTZ cut and then dropped. Diovan and Accupril will be dropped next week. 2 new drugs to be added (scrips are with wife, will pick up tonite). Next 24 hour urine is Aug 9th, with redo of bloodwork and salt suppression on aug 10th. AVS will be done on a 3 day hosptial stay after tests come back. If test is positive for Conns, surgery will be in September. Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2009 Report Share Posted July 14, 2009 Thanks . All I can say is " WOW. " If my investigation into Lyme yields no solutions, I am going to pursue AVS. I'm sick of being sick. I wish you the best. I'm curious about the new drugs to be added. Keep us informed. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bindner I had my intro visit at NIH for medical history, adjustment of meds and scheduling of tests. Metropolol to be dropped this week, with HCTZ cut and then dropped. Diovan and Accupril will be dropped next week. 2 new drugs to be added (scrips are with wife, will pick up tonite). Next 24 hour urine is Aug 9th, with redo of bloodwork and salt suppression on aug 10th. AVS will be done on a 3 day hosptial stay after tests come back. If test is positive for Conns, surgery will be in September. Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2009 Report Share Posted July 14, 2009 I'm in the Endocrine teaching study, so I think the operative term is willing to come to DC and having PA. Time is not paid for, nor are outpatient scrips - but inpatient care is. Travel is not paid for either. Two new drugs are Verapamil 120 mg, 1x daily week 1 and 2x daily until salt suppression and AVS and Hydralazine starting next week. They are taking me off of Accupril and Diovan in week 2, cutting HCTZ to 12.5 mg for week 1 and then stopping and stopping Metropolol now. No change, as far as I know, to Terazosin (BID) and Norvasc, although I am checking on whether Norvasc should be stopped. Bindner Web Directory (links to my sites and blogs): http://www.geocities.com/mikeybdc/index.html http://mikeybdc.blogspot.com I had my intro visit at NIH for medical history, adjustment of meds and scheduling of tests. Metropolol to be dropped this week, with HCTZ cut and then dropped. Diovan and Accupril will be dropped next week. 2 new drugs to be added (scrips are with wife, will pick up tonite). Next 24 hour urine is Aug 9th, with redo of bloodwork and salt suppression on aug 10th. AVS will be done on a 3 day hosptial stay after tests come back. If test is positive for Conns, surgery will be in September. Bindner Web Directory (links to my sites and blogs): http://www.geocitie s.com/mikeybdc/ index.html http://mikeybdc. blogspot. com Quote Link to comment Share on other sites More sharing options...
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