Wow the last few days have been very eventful. We went back to Bastyr and met with the nutritionist, we are removing all white out of her diet... meaning, white flour mostly at this point. We are adding a few new items in her diet as well in hopes to open her eyes to the wonder of vegetables (wish us luck!). We go back in a month to meet with them again and talk about further elimination.. so far, not bad. We also go back and meet with the doctor at Bastyr again on the 13th.
Sadie went to Children's on Friday and after the longest we have ever had to sit in the waiting room in over six years we were finally seen. We were not seen by her regular rheumatologist, but I really liked Dr. Steven's a lot; it was a positive change. After examining her and really talking about her entire history, but focusing on the last 7-8 months Dr. Steven's was very surprised to see that Sadie hasn't responded to any of the various treatments we have tried. She feels that the RA is in her left ankle and her left knee also and Sadie did complain of pain in her left hip during the exam (to this point she has only complained of pain in the hip once and never during an exam). The consensus is... we have to change medications again, she should not be in this much pain with increased joints active and we just can't see reason to keep on this path. So, she started prednisone (steroid) right away and will start Remicade within the next week or two (insurance pending). The prednisone is a wonderful medication for making you feel normal... problem is... you can't stay on it very long. She had her first dose on Friday night before bed and by Saturday felt wonderful. Sadie rode her bike for the first time in almost a year and did it pain free yesterday! It was nice to get a glimpse of what it was like before this flare up! She will continue the Enbrel and Methotrexate until the Remicade starts and then we will eliminate the Enbrel, but keep the other and will remain on the anti-inflammatory.
If we do not have an appointment to get the Remicade on Tuesday (we will find out tomorrow) then she will have her first pool therapy that day. The Remicade will be given by infusion at Children's and will take a minimum of 3hrs a max of 6hrs. The keep her there for about 30-45 mins for observation after the medication is done to watch for any type of reactions. The Remicade will be given the first time - then two weeks later - then four weeks later and then from there we will see how she is and decide if we continue every four weeks or move to every six.
That is the update for now... thank you again so much for the prayers. I heard today at church a saying that is a great way to express how I feel is - there is something to say for the prayer of a miracle and there is something to say for the prayer of medicine.. please pray for both.
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