I don’t think there have been huge improvements in A from the steroids. I am so frustrated and let down. It turns out we were administering the steroids at too low of a dose (mom error in reading the label), but we have upped her dose to the true Rx and then upped it again to the max dose. I don’t feel like we are seeing what we should be.
After another rough morning I told J that I think we should go for IVIG. We haven’t done this in almost 3 years. But the rest of our bag of tricks aren’t working. J thinks that IVIG has never worked for us and that this is just our child. I think he is just beaten down. I think it does work but is short lived.