selah update

March 29, 2010 at 6:46 pm

Well, bad news. We had the MRI last Friday and when we went for her ivig infusion today the nurse stopped in and gave us the results. Selah has really bad arthritis in about every joint in the hand that they did the MRI on. They could only do the one hand as it took 45 minutes. I almost fell to the floor with grief. I thought i might pass out. I really thought that her hand problems were the cidp. Dr. Mendell did not and he was right. The Rheumatologist said that since it is in so many joints that they cannot inject and have to tx systemically. She talked with our neurologist and they agreed on Orencia as this does not have any neurological affects. This is given monthly as an infusion and completely supresses her immune system. I just want to go to bed and not wake up. Just when we thought that things were going better. Her cidp is going well. They said that if we do not do this that she could lose use of her hands and well she is 3 years old. She is really bright and I knew that when I would ask her to draw a circle and things, she could not do it. It was like her head knew what to do but her hand could not do it. Now we know. There are a few doctors out there who are supposedly treating this type of arthritis with large doses of ivig but we do not know any. Any suggestions. Thank you in advance for everyones prayers. You all are on our hearts around this house.