Reply to Holly

July 25, 2008 at 1:05 am

Hello Holly,
I haven’t posted in a while. My 11 year old daughter Christina has had CIDP since she was 3 years old. She has had every treatment available individually and in various combinations. She was in and out of the hospital often and always needed a combination of Chemo drugs like Cellcept as well as 2g/kilo of IVIG every 3 to 4 weeks. When she was 7 she had a modified bone marrow transplant (really no name for the treatment as it was experimental) Since then she has beed able to stay strong with IVIG treatments at home every 4 to 5 weeks. She no longer needs other drugs in combination with IVIG. She was in a wheelchair for 3 years when this started but she is now walking and strong and able to have a pretty good life. The key was not allowing her to get weak in between treatments. Whatever that took we did it. If you are able to stop the weakness in between treatments the nerves repair themselves somewhat and over time strength can return.
Being able to have the treatments at home with a visiting nurse has helped very much. Christina hated the hospital and was always upset. She still is very fearful of the treatment and fights against the needle access and deaccess but she is able to have a pretty normal life. We haven’t given up hope for a cure but we can accept how things are now. Christina’s doctor felt that the most important thing was to do whatever it took to not see signs of relapsing and weakness inbetween treatments. We wish you the best and know that is so very difficult to watch your child suffer.
All the Best