Reply To: IVIG/treatment and symptoms

I am going to be honest buny, I am having trouble following everything on the site. Plus alot going on at home, but this is what I think I remember. I think I figured out that a load was 114 grams for you based on your 125lb figure. The first time right after your load was a maint dose, the increased amount 48g every three weeks is almost a load. You asked me why the first dose was so pronounced, that is because you got it all at once and that is what your body required. To me it sounds like you should ask for a load again, maybe a few of them so that your body can recover. We did loads for a year before we gradually reduced by 10 gram intervals to a maint dose. Another potential problem is the time between your next dose. Much literature suggests frequency is more important than volume. If it were me, since the docs way is obviously not working, I would ask him if he could at the very least allow you to have 3 loads every 4-6 weeks, (by your description of your situation I think it should be every four weeks) then decrease by ten grams and split it up. So that would be something like on the fourth month of the load schedule go from 114 grams to 104 grams…given over two weeks for two days. So….52 grams over two days which would be 26 grams two days in a row, wait two weeks and do it again, the next month decrease by ten grams again, so 94 grams spilt over 2 weeks of the month, 47 grams over two days (unless you could handle the 47 in one day) wait two weeks and do the other 47. Decrease by ten grams until you get to 57 grams over the whole month every two weeks do 29 every two weeks. I don’t think I would let him go any lower tan that. That is about a maint. dose, just that it is over 30 days not the full 42 full life. It seems that 42 days is NOT a full life for you based on your statements of weakness. If you still don’t feel good, you may just need loads all of the time to feel good and repair. I know you are busy and work, but if you keep getting worse, the damage could be permanent and then you will be of no use to your family. I think I mentioned to you about the fanny pack, if you think about it, once you did the initial loads of four days in a row doing a load over a month one day a week would be less intrussive time wise to you and your family. It would be 29 grams once a week. You could do the fanny pack, do laundry cook dinner, be with the baby all the things you have to do. It would probably only take three hours to do 29 grams. I know it seems overwhelming and I know it sucks to have this intrussion in your life, but you have to get better. Moms are the rock of the family. I know you can get through this, it takes time and there is anger. We were mad for about the first 18 months, now it is no big deal, something we know we have to do. We actually even have fun with our nurse and it has opened up our lives and hearts in so many other ways. We are the stronger for it.