I want to welcome you to WHL. It is a great place to get information right from the source - those that are dealing with AI diseases - and to vent your frustrations, too.
I also read your entire post, and felt your anger and frustration. It's frustrating for all of us to deal with the medical community, but I know all too well how very painful it is to deal with them when you have a sick child. As others have said, you've done a great job of advocating for your child.
One of my earliest symptoms were those blisters, usually on my arms or hands. They disappeared completely when I was on a combination of Plaquinil and Methotrexate. Now that the MTX has been removed, they are back, but mostly on my trunk and legs, and are fairly mild. My sores start out as disc-shaped red blotches, then start swelling up and getting flaky. They don't itch, but are somewhat aggravating. Are your son's blisters like that? I've found that most of the rheumys are rather dismissive of these things.
Another thing that I have a rough time getting the docs to pay attention to are the neurological symptoms ( numbness in the toes and legs, spastic muscles, etc.). They try to dismiss those symptoms, too. If you research, you will find that several of the AI diseases can have neurological manifestations, including CNS Lupus and Sjogren's.
I really hate to see a child so young having these symptoms. Keep pushing for answers, Momma. Eventually, a good doc should be able to get him onto the right combination of meds to give him a normal life. There are several young people here who are dealing with it and going to high school or college. Once you both learn how to deal with his issues, you can help to keep him on the right track.
Good luck to you, and keep us informed.
The Following 2 Users Say Thank You to magistramarla For This Useful Post:
MommySquared (07-20-2011), steve.b (07-21-2011)