We are going to see Dr. Crawford at John’s Hopkins

    • Anonymous
      December 5, 2006 at 2:08 pm

      We are very excited. We are taking our 2-1/2 year old for a 2nd opinion on his CIDP/Myesthenia Gravis.

      Dell has been doing pretty good the last week or so. We had a large 18 gram treatment 2 weeks ago (12 hour infusion) and we are going to have another Friday. The largest he’s had prior to that was 12. At first we did not see any results, it was very upsetting, but after 7 days we started seeing improvement.

      He has even started to walk the walls. Dell has never walked before.

      We think we will be there 1-2 days. Only test I know for sure he’s doing is a rapid stimulation. I guess that is for the MG. He’s still not convinced he has MG and I’m not either. Postive blood but negative on the nerve conduction.

      This is our first appt. with Crawford.

      Please wish us luck and continue to keep Dell in your prayers.

      Thanks, Lori

    • Anonymous
      December 5, 2006 at 5:50 pm

      Lori,

      I am so happy for you guys. Good luck with everything, keep me posted.

      Jer

    • Anonymous
      December 5, 2006 at 8:53 pm

      Good luck, Lori! I can’t wait to hear how what Dr. Crawford has to say!

      Shannon

    • Anonymous
      December 9, 2006 at 12:11 am

      I know watching him start to walk is really emotional for you. I hope bigger and better triumphs are coming for you guys with your new doc.

    • Anonymous
      December 13, 2006 at 9:18 am

      Thanks for everyone’s support. I love this forum but sometimes I don’t check things for a week or so. A 2 year old keeps you very busy.

      We are looking forward to our visit but not to the 17 hour drive. Also, I stuck my fingernail in my eye in the middle of the night and have to go to the eye dr.

      Thanks to everyone. Lori

    • Anonymous
      December 13, 2006 at 8:43 pm

      Lori,

      I hate it when that happens! I’ve never done it bad enough to require medical attention though, so it must be bad!

      Hope your eye feels better!

      Shannon