Bear with this one, it is complex to understand the lab results.
Dr Zapata called today with blood results from Ashlyne's 6mp blood test taken when we were in Omaha on Dec 16th. The 6mp test is run in a lab in San Diego, it is the only lab that runs the test Dr Z needs to see, so it is no uncommon for these results to take 3-4 weeks. The 6mp is Ashlyne's immunosuppressant drug, it has two different levels they watch for the control of her Crohn's.
When she was last tested Ashlyne's levels of the 6mmp was almost twice the hightest level they want. 6mmp is supposed to be below 5700 and she was well over 9000, I think 9800. Even though it tested so high they felt the benefits of the 6mp outweighed this negative of toxicity, or at least in the short term. The other level has a target level of 200-400. When Ash was first tested after being on 6mp for 8 weeks (Aug) she tested at a level of 186, so they increased her to 50mg daily of the 6mp. When Ash was at the 9800 6mmp level she actually tested in the 300's so that is why they kept her at 50 mg daily cause it did get her into the effective levels.
Dec 16th lab work came back with her level now down to 142 and her 6mmp is down to 4077. 6mmp level is now good but her other level is too low for effectiveness of the drug. This could be why her sed rates were slightly elevated last week again. To Dr. Zapata this does not make sense since from her ultrasound in Dec she has had healing. He does not understand if she is on the same levels of drugs (6mp) why are her levels changing so much. Normally if a patients condition was worsening they would consider that she was not absorbing the medication due to a flare. Dr Z is waiting for the results from the blood work we took on yesterday.
He is also considering changing Ashlyne to a different steriod than prednisone called budesonide, this does not absorb into the body as much and does not have the systemic side affects that prednisone has. He feels Ashlyne is a good candidate for this drug. If you read up on the drug its side affects are really not much different than the prednisone, I have not looked at the chemical info on it to understand the system affects that Dr Z mentioned.
Ashlyne's face is more swollen then ever, it is moving down her neck more and more. Her body hair is growing and her hair line is starting to connect with her eye brows, along with more facial and body hair, this is not making this little girl very happy. Ashlyne is experiencing more frequent headaches also. She weeped in my arms last night and this afternoon wanting things to be different. So we are now waiting till Wednesday or Thursday when her labs come in before Dr Z makes any changes.
Please pray that God's will will be done in her treatment, we want to pursue Chiropractic treatment as we have meet multiple Crohn's patients in our area who have been helped tremendously by receiving chiropractic treatment. Due to custody issues this is currently not possible. Ashlyne wants to try chiropractic anything to help her with her disease and improve her quality of pre-teen life. Please pray that this will become an option of treatment in coordination with Dr Z's expertiese. I know many of you have sent us email links and articles about the many successful alternative treatments and we thank you so much for your support and interest in her care. Steve and Jo Wood have been so pro active in seeking information for Ashlyne's health, we thank you for the input from you and your Chiropractor. Minda Hampton has given us tons of great links and leads. Thank you. Please continue to let us know of any new information, we have to try everything we can to help her.
Please pray that Ashlyne will continue to be encouraged by prayer and her relationship with God and she will not become discouraged. Pray for her healing, perseverence and patience with this all. Pray that her diet will continue to satisfy her and that the insurance will come thru and cover the elemental supplement she is on. I am sorry for the lcomplexity and length of this blog, trying to explain her lab results means nothing if you have nothing to base them on.
Tuesday, January 6, 2009
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1 comment:
Hello: I read your post and completely sympathize. My young daughter was diagnosed with IBD - Ulcerative Colitis last year. I do not know if this is the best forum for this but, in your post, you mentioned alternative methods. I am very interested and would like to explore this as well but I do not know where to start. I there any chance you can help me get pointed in the right direction?
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