We had our infusion yesterday and all went smoothly. Gary tolerated the IVIG well this time. Last month he had a bit of a reaction. LEVELS levels came back great. Yes, of course I celebrate this but we are still having active skin issues. We saw the dermatologists today. He said exactly what I thought he would. The rheumatologists say that the new rash he has had since September is not JDM related. Dermatologist said it is. He said they would be in contact with me once they get together and discuss. He was thinking of suggesting we up a medication. I was thinking it was a good he said it was JDM only because I didn't want to hear "I don't know". We talked about how great his levels are but the small things that I have noticed, like poopen out at the top of the stairs or when I lift him he doesn't feel as tough as he was, like his arms are going to fall off at the arm pits. That was confirmed because he had unusual bruising in his armpits. I told the dermatologists that I understand his levels are good but I am in contact with other JDM families who have seen normal levels, but disease activity. I told him I am not trying to be negative or make things they are not. I have just seen what this disease could do. The disease seems to have technique to sneaking in behind enemy lines and stricking. I just want every possibility considered and treated. I had posted a vent on the support board about not knowing. Not knowing if Gary's voice just changed to a low pitch raspiness. It sounded like he was whispering. It returned that afternoon but it is enough to notice. I have 2 other kids and a lot going on so when something small like that is noticed, well then, it is note worthy. I got a lot of good advice from the board. I am glad it is there.
39 Days left : ( eeeeekkkkkssss till the 26 miler!