April 1st visit - no fooling
On Wednesday we went to Omaha and meet with Dr. Zapata, he spent well over an hour and half with us reviewing Ashlyne’s history and answering our many questions and concerns. We, all four parents, we very pleased with how the visit went. Dr Zapata did allow a very open dialogue and listened to our requests of trying diet modifications and drug modifications before going on Remicade, he still believes that ultimately Remicade is Ashlyne’s next step. But he is willing to keep her of the 6mp (immunosuppressant) and keep her on her Entocort (steroid) for now and make no other diet or drug modifications to see how she stabilizes. Ultimately we will do nothing until her liver goes down, this is the greatest concern right now. We essentially are facing an unknown with her liver, our local doctors office messed up on the 19th and did not order the right blood tests so we can not compare her 6mp with results with her liver since she has now been off the drug for 2 weeks. We are starting her with the chiropractor on April 20th to begin treatment. If she remains stable on diet and chiropractic and entocort, her liver goes back to normal then we will begin weaning her off her Entocort as well. Ashlyne has been on steroids now for over 9 months, minus 7-10 days she was off at the end of September. If she continues to remain stable once off the Entocort then we are going to just treat with diet modifications, antibiotics, supplements and chiropractic.
All this can change if she begins to regress or have a flare. Both doctors are willing to monitor her labs as we try this route, weekly sed rates, CBC’s etc. Even endoscopy’s/MRI’s if necessary. We will continue to face variables on a regular basis in her treatment but are feeling very good about being able to back her out of some of the medications to try to find what has actually helped her the last 3 months of no symptoms. Since Ashlyne is clinically well as the doctors put it they are willing to go this route.
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