Reply To: IVIG – when you don’t know if it is working
I was just thinking about this and cannot figure out how to articulate this, but I will give it a try. Please jump in and tell me if it is a stupid idea. Here goes!
So doctors say ivig takes months to work in some, well if it only lasts 42 days in the best conditions, it must mean that: ivig given continuously continues to stop additional demylienation provided it is religiously given. If the demylienation is stopped, it takes months to feel better from the ivig because it takes months to start healing. So in essence, the ivig is not healing your body or making you feel stronger, it is stopping further demylienation and either putting out the inflamation (those who seem to have that sort of varient) and allowing the nerves to get the message to the muscles, or if there is actually nerve dmage, it is stopping the demylination, allowing the nerves to repair and then allowing the muscles to get the message. This varient would obviously take longer to see the affects, because more than an inflamatory process has taken place. So based on the damage amount and the varient and the duration of the damage it can be very different as to how long it takes to see a difference. The difference is in the healing of the damage, and the ivig just allows the healing to take place. So maybe when it seems like there is a lapse in its benefits(ivig) it is just because the healing has to take place now.
OK, so is this a realistic thought? Can anyone help me to figure out the mistakes? I think I just have to stop obsessing about cidp, ivig and just let Kevin get ivig monthly and forget about it. It just gets so hard when I see him wake up in the morning in pain from play the night before and I cannot answer his questions why it hurts and how much longer is this going to go on.
Dawn Kevies mom