Hi Rhonda,Thank you so much for your reply! You gave me a really good perspective on this disease. I guess I'm a still adjusting to the reality of it all. I feel like I've been so strong these past few months, and now the long-term nature of this disease is finally hitting me. I am having much difficulty watching Lauren go through this, especially since she has a healthy (and very active) identical twin sister.
I have done, and I am continuing to do as much research as I can about JDM. The Myositis and You book has been a great resource to me. I didn't realize that continued IV solumedral after the initial 3-day dose was such a common form of treatment for JDM kids. I do feel better knowing this and hearing about success stories like that of your daughter, Megan. It was heart wrenching for me to read her story, at 2 1/2 having to go through all that treatment. And now she is an active 7 year old, that's amazing! I am sure you are very proud of her.
Lauren has been a real inspiration to me! She has adjusted very well to her new treatment regiment. I have seen marked improvement in her physical strength and flexibility over these past few months. Her rash is still quite prominent, and the steroids have affected her appearance and moods. Yet overall she is progressing and handling it well.
Thanks for your support!
Janet