Reply To: 7 year old female with CIDP
I just read my good friend Kelly’s post. I have to start this out by saying I am just a mom with limited hands on experience and no formal training, so, as I have said before, you have to take what I or anyone else on the site says with a grain of salt and incorporate it into what the docs say. That being said. Mathematically, I figured out what Kelly proposes, it works out to 7grams a month as a loading dose. As I mentioned the one abstract I read said children can go as high as four, but I have never heard of 7g. The kidney’s and heart are affected by ivig, I cannot imagine a child being infused 45g a day over 5 days. That may have been what worked for Emily, but I would seriously consider it before I did it for Kevie or anyone else. I agree FULLY that 12g daily over 5 days once a month is not enough. I would not want to do cell cept or steroids (as I too fought that battle) So I would ask the doc to increase the frequency of ivig. I am not sure if I would ask for it every 2 weeks to start or every one week. I would have to see all of the facts in front of me, such as, how soon after ivig do you see improvement, how soon after do you notice downward change. I guess you would have to start with basic observations, record on a scale 1-5 her ability to walk on heels, the grip test, walk on toes, the ability to resist when her elbows are pushed down on while in a wing flapping position, resistance to the feet being pulled toward you, and the ability to get up from the floor while sitting pretzel style. 1 being the worst,5 the best. I might do this 1 day after completion of the 5 day load, then maybe 5 days later, if things are better, go to 10 daysthen 14. Since you do not want to see signs of a relapse, because by then it has already started, maybe for the first testing month you could push it to 18, then 21 days, but by 21, I think being that you know she cannot make it a month, I would start the ivig. Probably, I would stop observing at day 10-12 and just plan on another loading dose on day 14. Maybe you will find you need it by day 7, but 14 might be a good place to start. This is trial and error and takes patience in figuring out a plan. Being her mom, you can be the accurate record keeper and the eyes for the doc. If you keep careful charts and documentation, the doc would be sure to listen.
If you do have infusions every 2 weeks , 12 g each day over five days, that works out to the 4g/kg as a load for the months, that is the amount on the abstract I read. I will locate that today and get it to you, fax at the hosp w/ the number you provided or mail it if it is not legible. If you were to do it every week, it would be 7.5 grams. You have alot to think about.
FYI, if you do the actual math, her weight, 70lbs/2.2 it equals 31.8, so 32 grams. When X by the 2 g, it works out to 64. When divided over 5 days it is 12.8. Usually they round up, lets say 13. Mar Ens pointed out some brands are in 6g bottles (thanks mark, that is good to know) Others are in 5,10, 20, 25, maybe they could give her a 10 and a 5 of gammaguard to be closer to the actual amount, being that she needs the ivig. Usually they round up. Just a thought. I hope Kelly will not be mad at me, but Ultimateley you are her mom and you and her doc have to make the decisions. I am just the peanut gallery. Good luck.
Dawn Kevies mom