Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I am happy for you and your daughter. ( n,22, systemic) Sent from my iPhone On Feb 17, 2011, at 2:41 PM, " " <twinsmommy2005@...> wrote: > I took Lexi down the road about 150 miles to a new peds rheumy on Tuesday. I'm so glad I did!!! He was totally awesome! He looked at every joint for her, and even found some concerns with her neck. He said that if he had seen her 10 months ago he would have started with the steroid injections for her wrist and saved the MTX for later if they didn't work (that part makes me really upset because I specifically asked for that at her first visit with her previous peds rheumy and was told " no " ). He ran a bunch of labs and check the " sequence of letters dash 27 " one, that hadn't been checked before. He's also give us medication for her migraines that she's developed as well and it should help her sleep as her body rids itself of the prednisone she's been on for so long. We go back on March 4th for her first injection. Really, really glad we went. Long drive, but totally worth it! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I am so happy that you found him. That is such a comforting feeling. I am so thankful that he sounds thorough, too. This will be a big step in handling this disease/monster. Audra 14 poly 07 Peyton 13 poly o8 > > I took Lexi down the road about 150 miles to a new peds rheumy on Tuesday. I'm so glad I did!!! He was totally awesome! He looked at Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Yeah! So glad for you both! Kirsten > > I took Lexi down the road about 150 miles to a new peds rheumy on Tuesday. I'm so glad I did!!! He was totally awesome! He looked at every joint for her, and even found some concerns with her neck. He said that if he had seen her 10 months ago he would have started with the steroid injections for her wrist and saved the MTX for later if they didn't work (that part makes me really upset because I specifically asked for that at her first visit with her previous peds rheumy and was told " no " ). He ran a bunch of labs and check the " sequence of letters dash 27 " one, that hadn't been checked before. He's also give us medication for her migraines that she's developed as well and it should help her sleep as her body rids itself of the prednisone she's been on for so long. We go back on March 4th for her first injection. Really, really glad we went. Long drive, but totally worth it! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 , I am so glad that you found a doctor that really looked at Lexi and took the time to see where you have been and then took the important steps forward. He is a doctor and human so will not be perfect as no person is but it is so very important that you found one that you can trust the care of your child to I. As I think I told you in an earlier post our first rheumy was good and well respected in the rheumatology community but she did not give us the time of day. We had a personality conflict I think and she was in and out of our room so fast that I often had to follow her down the hall as she was headed to the next room to get any answers I needed. We changed and adore our new rheumy. He is so thourough every single time and the nursing team at Childrens Mercy get back to us with in 24 hours of any call in ususally the same day but not always. I am the one that put off moving on to the good meds, he mentioned them several time and saw my resistance and did not push me. I kind of wish he had but then I may have still been firm. Now that we are on stronger meds we are doing so much better. I also have five kids but only have two left at home. One is in college and my Jaye is 17 so much different from a house with five young ones. I have been a single mom for the last 9 years though and that has been tough. But, I choose to continue to travel and make the 360 mile round trip to see the one we like every two months. This time we get to wait for three months, kind of exciting. Again, I know what it is like to have a doctor you just do not feel is caring for your child. So this is not only good for Lexi it is so good for Mom to know that her childs care is in the hands of someone who has time for her and seems to care about her. Veri & Jaye 17 poly Lexi's Appointment I took Lexi down the road about 150 miles to a new peds rheumy on Tuesday. I'm so glad I did!!! He was totally awesome! He looked at every joint for her, and even found some concerns with her neck. He said that if he had seen her 10 months ago he would have started with the steroid injections for her wrist and saved the MTX for later if they didn't work (that part makes me really upset because I specifically asked for that at her first visit with her previous peds rheumy and was told " no " ). He ran a bunch of labs and check the " sequence of letters dash 27 " one, that hadn't been checked before. He's also give us medication for her migraines that she's developed as well and it should help her sleep as her body rids itself of the prednisone she's been on for so long. We go back on March 4th for her first injection. Really, really glad we went. Long drive, but totally worth it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Great news! So glad it went well. Just an FYI - the blood test is HLAB-27. It is a marker that is looked for when they are looking for spondyloarthropy/spondylitis. You can be negative and still have it, but if you are positive there is more chance for organ involvement. Michele ( 23, spondy) From: [mailto: ] On Behalf Of Sent: Thursday, February 17, 2011 4:41 PM Subject: Lexi's Appointment I took Lexi down the road about 150 miles to a new peds rheumy on Tuesday. I'm so glad I did!!! He was totally awesome! He looked at every joint for her, and even found some concerns with her neck. He said that if he had seen her 10 months ago he would have started with the steroid injections for her wrist and saved the MTX for later if they didn't work (that part makes me really upset because I specifically asked for that at her first visit with her previous peds rheumy and was told " no " ). He ran a bunch of labs and check the " sequence of letters dash 27 " one, that hadn't been checked before. He's also give us medication for her migraines that she's developed as well and it should help her sleep as her body rids itself of the prednisone she's been on for so long. We go back on March 4th for her first injection. Really, really glad we went. Long drive, but totally worth it! Quote Link to comment Share on other sites More sharing options...
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