A few more days...we go Tuesday to Boston for our second opinion. I am getting nervous.
I am resigned to the fact that Pentasa is doing nothing and we need to move on...and the steroids have her so big nothing is fitting her, and I look like an AWFUL mom as she eats mostly junk food (no fruits/not many veggies), a LOT of it (steroid side effect) and looks obese (also steroid side effect)...I am only glad she isn't in school yet/getting teased about it
She is also dependent...this is her second wean attempt and I've been seeing blood again after getting her down a few doses.
Anyway, rant over. My issue with using Remicade is that (thankfully) she complains of NO pain...wondering if I should hold off on it so if she DOES have pain we still have it in our arsenal (I've heard it helps a lot with pain symptoms). That being said, I'd prefer NOT to be the one that has to give her three painful Humira shots a week, either. (Not the worst thing in the world, but the steroid enemas aren't her fave, either.)
So funny that we were relieved to get a diagnosis so that we could treat her, but even THAT is uncertain.
OK, vent over. Looking forward to getting another opinion and moving on to something that (potentially) will work better for us
)
