Reply To: 7 year old female with CIDP
If she is around 70lbs, it works out to 12.8 g. I could be wrong, but I don’t think it comes in 1g doses. I thought it was only available 5,10,20g denominations. They usually round up to say 15. She may have needed closer than 30 days apart. The fact that she reacted instantly the first time is promising. The initial attack may not have been halted and that is why she relapsed. If it were my child, I would at least ask the doc to try again, with a loading dose and in two weeks another loading dose. Do that for a few months and then try every three weeks, it there is a relapse, back to two weeks. You asked about my son, yes, he is relapse free since oct 07 since we started doing the loading doses. Initially in Oct 06 he was dx w/gbs, given ivig and did well from a nearly paralyzed state, unable to walk, dress, hold a pencil or cup, bowels, bladder and breathing affected in picu for 10 days. He relapsed after about 5 months, cidp dx, more ivig, totally recovered in 3 load doses which is not typical, so gbs again, relapse 5 months on Oct 07 and here we are. Once you find the right amount of ivig needed to stop the auto antibodies from overtaking antibodies, you allow the body to heal. It heals a mm a day if no further demylienation (attack ) is taking place. I did the math a long time ago, it is something like 14.37 inches a year (check my math) But as soon as another relapse happens, back to that mm mark you start!! I do not know all of her history or symptoms and I do not want to give you false hope, but I really think it is important for your sanity to know there is a medicine, it is treatable, kids seem to respond and heal better than the adults and once a plan is in place cidp is managable and some people even go into a permanent remission. Some of the abstracts I will send support that. When this first happened, I wanted us all to die, I felt so low and helpless as well as hopeless. Confusion, lack of knowledge and being alone until I found this site. Now, that seems so long ago, and our treatments seem like no big deal. (Well almost, compared to the beginning) So don’t give up and come here when you feel sad and we can help. You can send a private message to someone on the site, go to their name and you will see the prompt. If ivig becomes a regular thing, you might want to consider a port, I can tell you more about it if you want. About the cell cept. If you read on line I am sure you see the side affects, but if you need it, you do. It is an immunosuppressant, it wipe out the immune system. not easy to deal with for a school age child, not to mention the side affects. She may not even be able to go to school during flu season. It is not to be taken lightly. Steroids too obviously come with huge side affects, especially with children and growing. If you would like, pm me and I could give you my phone # Be strong, we are here for you and have been where you are, we understand.
Dawn Kevies mom