For Dawn

May 16, 2008 at 10:03 am

Dawn, it sounds as though Kevin is doing well if he is riding his bike 4 hours! I was getting the maximum dosage of IVIG for my weight once a month for nearly a year. I am sorry; I can’t remember the exact dosage, but the cost without insurance would have been $10,000 per dose. I remember that, so it must have been a lot. I went cold turkey on the IVIG but was taking steroids until almost eight months after I stopped the IVIG because I was in the midst of tapering down from 80 mg/day of prednisone, which is what they gave me when my paralysis was getting worse and they wanted to stop it. So, I wasn’t completely unmedicated as I stopped. I had a lot more trouble with weakness and symptoms in the year or two after I started recovering because of lingering nerve damage. As you probably know, nerve endings grown back, so eventually it was much better. I have an eleven year old son as well and really feel for you having a child with this illness. You sound extremely strong and well informed. He is lucky. All the best! Liz

for Dawn

November 5, 2007 at 10:45 pm

You are one great mom! You are holding so much together. I can’t even imagine.

May tomorrow be much better!