selah, cidp, and arthritis

I am sorry to say that I do not have a fax. We are a little archaeic around here. We do not have tv and have cell phones but do not text. We obviously have a computer but have limited knowledge. We kind of sit around and look at each other a lot. HA Ha

Thank you everyone for your prayers. We believe in prayer around here! They want to put Selah out to do an MRI on her wrist and then at a later date out her out again to put the steriod shot in. I have been awake through the night just thinking about her being put out twice. I think I am going to call today and say, why can’t we just do the infections and skip the MRI. Her being sedated all the time is crazy. Be glad if you or your child are old enough to stay still. The weird thing is that the potential tx for reactive arthritis for Parvo 19 is IVIG given over a five day period. This is kind of at the experimental stage but a weird coincidence. They have found that when they take a needle and draw some of the fluid out of the joint that they is still virus sitting in there and I guess the ivig combats that last little bit and stops it from attacking the joint.

P.S. When my other child has even a small medical complaint, I usually brush it off as he is the “well” child. He has been complaining of his knee hurting. I hope it is nothing. He is so pigeon toed that that cannot be helping his knee. He has been chosen to participate in the “Math Olympics” program at his school today and it is a big deal. I gave him a motrin and sent him on his way.

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.