New IVIG schedule

    • Anonymous
      August 23, 2007 at 4:46 pm

      We’ve been weaning Emily’s IVIG treatments down. Last summer she was getting 9-10 a month and last month she got them once every 10 days. We just saw her neuro today & he wants to put her on IVIG once every 2 weeks.

      I am excited but scared at the same time. The longest that she’s gone without IVIG before a relapse is 12 days & that was back in December. She lost 3 days when she was on the highest dose of Prednisone, so we had to start her on IVIG once a week again. We’ve slowly weaned her down again & she really is doing well.

      The other day she told me that her cheeks, legs, arms & feet were “tingly”. Then the next day she said that her cheeks were “tingly” again. She could have just gotten a chill as both times she was sitting by a fan but still…I worry.

      Just wanted to let you all know what was going on & to ask for your prayers that this new schedule will work.

      I hope everyone is having a great summer!

    • Anonymous
      August 24, 2007 at 6:45 am

      Kelly I’m keeping my fingers, toes and eyes crossed for you and Emily. Sometimes I think the tingly feeling is just my nerves going “huh, what’s all this stimulation? I’m not used to it.” And sitting by a fan having that constant wind on her face and skin would likely set the nerves to jangling.

      Sometimes it helps to use lots of lotion on my skin because it adds a little barrier from those minute nerve stimulations that most people don’t notice, not to mention my skin is dry.

      Also my PT recommended trying to reintroduce sensations to my skin in a controlled manner to try to reduce the overstimulation effect. That seems to have helped a bit though there are still some patchy numb areas.

      Good luck, I’ll be watching the posts to see how she does. 🙂


    • Anonymous
      August 24, 2007 at 7:53 am

      I wish Emily the best of luck! This is a big step. It sounds like she is stronger than she was before which will help.

      Whenever you guys post about one of “our” kids it just makes me wish for a cure all the more. As adults we can express ourselves (sometimes not always eloquently! :p ) but we can understand what is happening. The kids just have to “take it” as it comes and it has to be extrememly frightening. All of you Mom’s and Dad’s caring for kids know how hard it is to watch your child when they are ill. I have the upmost respect for all of the caregivers.

      Good Luck Emily! Keep us posted as we care about our kids!

    • August 24, 2007 at 11:54 am

      You know I really feel your concearn and angst! I too wonder if Kevin still needs ivig for cidp everytime something happens, or if it is residuals of aidp and we did too much. I do not know if I never noticed it before, but lateley when he sleeps, I notice different parts of his body twitch. I wonder if it is just part of rem sleep or something new is up, or if it is just the way it is now. How will we ever know how to distinguish all of these different “things”. I do not know about you, but I am truly driving myself crazy worrying about it. It is as if I really feel part of my sanity and control going away. We can’t really just relax and wait and see, because we might be wasting time, as well, we cannot keep up this constant worry for ourselves as well as the kids. Who the heck is going to help us moms figure this out? When is the step by step manual going to be out at Barnes and Noble?

      On a lighter note, how is the house going? Are you guys getting much rain there? We are swamped in Illinois. The neighborhood ponds have jumped the burms and are going into the street. Fish and all! Thank God we are on a hill! Have you picked out new furniture or bought any spring bulbs to plant yet? I bet Emily is going to have a great time digging in the mud! That used to be my kids favorite thing to do when they were young! Well, have a nice weekend and I hope you get some relaxing time this weekend!

      Dawn 😮

    • Anonymous
      August 26, 2007 at 1:32 pm


      I know how scary everything is. We won’t be weaning Dell from steriods for awhile but when it happens, I will be just like you.

      Good luck and keep us posted.

      love, Lori