Naturally, your notebook doesn't have to be published on the Internet, but you never know. It's a good idea to be informed. Read some books, scan the Web sites, ask a lot of questions and pay attention to the answers. Be active in the decision making process - don't just do what the doctors say. Using a notebook can go a long way here, too.
Most doctors appreciate a well-informed patient.
Another thought is to seek help and support. Don't try to go it alone. Your doctor can tell you where local support for JDMS is - usually rolled into another disease's support because there are never enough JDMS patients in one place to have an actual support group. Seek help from relatives, friends, and neighbors, as well as medical professionals, particularly if your child is disabled by the disease. There are a number of Web sites that offer support for the Myositis diseases, and you should take advantage of them.