selah, cidp, and arthritis

    • Anonymous
      March 13, 2010 at 6:34 am

      Have not posted for a while. As you may remember, my daughter is 3 and was diagnosed with GBS and then cidp when she was 2. She got cidp/GBS from a virus called Parvo 19 or Fifths disease. When she was first diagnosed with the Fifths disease, she had TERRIBLE arthritis and like every joint in her body and then when they started giving her ivig, it treated the arthritis and they did not even know that that is what was making it better. Dr. Mendell knew it when we started seeing him and he said he was killing 2 birds with one stone. She got weekly ivig for like 6 months and then ever other week and things just seemed to go back to normal: her walking and running and all. Her HANDS never seem to go quite back. I kept saying this to whoever would listen and everyone thinks I am trying to be negative. I was starting to think maybe she had MMN or something and then I begged to see the Rheumatologist and guess what, she has arthritis in her right wrist and left middle finger. I AM GRIEVED AND CANNOT EVEN SLEEP. I thought we were past the arthrits thing and all we were dealing with was cidp. Sorry for the long post.

    • March 13, 2010 at 11:52 am

      Hi Pamela,
      So sory to hear the news. Did Kelly send you the papers I sent her w/info? There is some valuable info. I am going to pm you in a bit. Will pray for your family at Church tonight.

    • Anonymous
      March 14, 2010 at 11:02 am

      I have the papers to send but my fax machine (I hope you have a fax) keeps saying “Set original” and I have NO idea on how to fix it!

      I did try to call you the other day & left a message. I’ll try calling again in a bit.


    • Anonymous
      March 14, 2010 at 11:46 am

      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

    • Anonymous
      March 17, 2010 at 1:22 pm

      sorry to hear this about your little one. we are praying for her and for your family. I am praying specifically for a healing.
      Hang in there its not easy

    • March 17, 2010 at 8:46 pm

      It is my understanding that there about 40 different types of arthritis.
      Rheumatoid and Osteoarthitis are the most common. You daughter might have an arthritis that doesn’t get worse and could go into remission. I don’t know. At that age more need to be explained and perhaps a second opinion wouldn’t hurt. They can do a blood test for the Rheumatoid arthritis and the osteo arthitis is usually related to aging.
      I am praying that Selah heals quickly.

    • Anonymous
      March 18, 2010 at 7:28 am

      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.

    • March 18, 2010 at 9:02 am

      About the sedation, ask about twighlight. We had it for the port surgery. You are not all the way under (different levels) but enough to get the job done. I too had a surgery with it and a scope. Maybe that is what they are using when they refer to sedation.

      How old is your son? At about 10-13 boys can have this thing called osgood schlatler. The patella if exrayed looks like a bone is chipped off, when I saw it I freaked out. Anyway as the child grows, the ligaments/tendons stretch and push the bone back in place. Just a thought, don’t know how old he is.

    • Anonymous
      March 18, 2010 at 11:35 am


      So sorry to hear about your daughter. My son who is almost 4 has some medical conditions, mostly minor, but I understand how heart-wrenching it is. He had 6 surgeries before he was 2.5 years. As hard as it is, I would think of all the other children that were suffering so much more, such as with cancer. A little boy at my son’s school has brain cancer and I cry every time I read the updates. Hang in there.

    • Anonymous
      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.

    • Anonymous
      March 29, 2010 at 7:11 pm

      I’m going to call you now but in case I don’t get through, I will call you tomorrow evening. Emily has treatment & it’s usually over around 7pm.


      PS, It WILL be ok. Just keep telling yourself that. It WILL be ok. I promise!