• Anonymous
      August 26, 2010 at 7:20 am

      Well as most of you probably know, we took my four year old daughter with CIDP and arthritis to the National Institute of Health in Maryland to have her checked out by Dr. Neal Young. Dr. Young is the head of the Hematology branch of the NIH. They reason we saw him was because it is believed that the virus parvo b19 or fifths disease is what caused both her cidp and arthritis. Dr. Young was very polite and personable and he listened to us and had his fellow do a complete history on her. He said that he believes that based on his past experience that she will come out of this in a while. He thinks that her body is continuing to attack itself because she still has small elements of the virus hanging around in her blood and that because her immune system is normal that it will eventually rid itself totally of the virus. He said to keep up with the ivig and to spread it out as her neurologist sees to and keep up with the arthritis so that she does not get joint damage in the mean time. He said that he has treated numerous other doctors at the NIH with post parvo arthritis and that the arthritis is gone after years of steriods but that the joint damage is now the problem. They are doing on going research there on all kinds of things and they drew Selah’s blood, my blood and my husband’s blood and said that they are going to freeze it for future reference. He said that unfortunately we were going to help him with his research more than he was going to help us. The thing that shocked me is when I asked him how many cases he had like Selah, he said ZERO. She is an odd ball. Great. There is hope and we can’t live without it. Giving hope to everyone on this forum.

    • Anonymous
      August 26, 2010 at 7:51 am

      I’m sorry to hear that Selah has such a rare condition – I will add her (and you) to my prayers. But I’m also glad there is hope for a full recovery! Please keep us posted.

    • Anonymous
      August 30, 2010 at 6:59 pm

      I am also praying that she will have a complete healing. sorry to hear she is still having these problems.