Reply To: 7 year old female with CIDP
I have an 11 y/o boy dx at 10 w/cidp. Did she have any response to the ivig initially, how far apart were they? Children CAN tolerate a higher than 2g/kg dose. Did she get the repeat ivig 2-3-4 weeks apart. Currently Kevin gets loading doses monthly, but there is a girl named Emily, Emily’s mom, who got more than a loading dose weekly for a while and is now 3 weeks apart at a loading dose. PM her mom she knows the details better than I. Personally, I would try as much ivig before anything else. Obviously if there is no other alternative, you have to do the cell cept, steroid, ivig combo. give the high ivig a chance. Talk to your doc, I have some abstracts that I soon have to locate for another member and mail them to her for a doc appt. I would be happy to do the same for you. They talk about basic protocol, peds tolerating higher ivig doses and the benefits of ivig over long term side affects of cell cept etc. I have these because our doc was contemplating cell cept and I found solid evidence backing up my thoughts. Obviously, cell cept, steroids may be your only alternative, but it is worth exploring. I will check back later, going to dinner.
Dawn Kevies mom