We’re experimenting with more treatments

    • Anonymous
      March 15, 2007 at 5:52 pm

      We are back in the hospital (Thursday) for another 10 grams which works out to be 1 gram per k/g. We just finished 25 grams the w/e.

      Our dr. agreed to try 1 treatment each week, hopefully for 4 weeks to see if it will keep Dell up. Just like Emily (Kelly’s daughter) we saw the decline 9 days after we saw the strength. I know this is confusing, I’ll spell it out.

      Received treatment Friday, Sat. Sunday
      saw strength following Wednesday
      saw loss of strength the following Friday (9 days after the Wednesday strength day)

      Hope I have not confused anyone even more. Thanks for all of your prayers. Dell had a 102.3 fever last night so the dr. is running todays treatment very slow, 12 hours. He also ran tons of bloodwork and the all time hated cathater. I hate to see him go through all of this. Thank God he has loving parents that would do anything for him.


    • Anonymous
      March 15, 2007 at 8:21 pm

      My prayers will never stop coming your way! Hugs for everyone 🙂

    • Anonymous
      March 15, 2007 at 9:46 pm

      I got your message the other day. It’s interesting that he relapses after 12 days. The difference between them is that Emily is a VERY fast responder to IVIG (knock on wood). When her eye is bad it usually takes 3-6 treatments to get it back to normal (depending on how bad it is). Usually after the 3rd treatment we see alot of improvement.

      When she first came down with CIDP & was hospitalized she could hardly walk when we first went in. After 2 IVIG treatments she was running, jumping on her bed & climbing like nothing ever happened to her.

      I hope that you see continued improvement in Dell. You know how I feel about getting his IVIG levels up & maintaining them. I really believe if you can do that then his body can start to repair itself.

      HUGS & I hope the hospital stay isn’t too bad now that the IV is in.

    • March 15, 2007 at 10:47 pm

      HI Lori,
      We just got back from the hospital today. Kevie had a tough time too, fevers, whole body violently shaking and two failed spinals. I hope we can help these kids soon! I think Kevie is tougher than I am! We also are going to try a maintanence program. Good Luck Dawn!