Reply To: IVIG/treatment and symptoms

February 29, 2012 at 12:35 am

bny, it is not that you are posting all over the place, it is that I have alot going on (going back to oncologist after 12 years, I think something is up, hopefully not) plus I am having trouble getting used to the new site. It used to be easier to reference a previous post. I just have to get used to it. About talking to your doc to change the treatment, if you explain in detail through a journal with documentation that shows when you feel better and when you feel worse, he should be able to see that additional treatments might be in order. It is a big trial and error process. He did start with the standard protocol, now he just has to figure out what your body considers standard protocol for you.

I agree ALS is a distant dx, nothing to worry about now, you would not have responded to the ivig if it were ALS. We use a company called Coram for our at home infussion. They are nation wide. If you have BCBS for insurance, they are actually the preferred provider. We could not do it without home infussions. I don’t know what is going to happen when college starts
(three years, hopefully with the grace of God we will be in remission by then!) You mentioned being a hard stick, eventually you might have to consider a port, it made things easier for us, plus he was only 9 years old when we started.