Dear Mom and Maddy,

Wow after reading your post, it left me speechless. I know this has to be traumatising to watch your daughter live in this pain. You have done so much this past year to attempt to heal your daughter and yet she is the same maybe worse. Mom, maybe too much, and I hope you don't take this personal, but with this disease comes desperation. The pain is so intense we will try anything to get rid of it. I do know that remission is completely possible especially for children if caught early and treated properly, so you are on the right track. I mean a cartwheel with a round off...what were they thinking...and now she is bound to the house and can barely walk, I am so sorry.

I can tell you from personal experience about four years ago my PM doc sent me to a group of specialist, this included weekly lumbar injections, pt, ot three times a week, a pain specialist psych and a surgeon. I was working at the time and I felt worse than I had ever felt. I could barely walk and every bone, joint and muscle in my body hurt. My physical therapist had me doing exercises that created enormous amounts of pain, I kept telling her but she insisted this was what I needed to do. My anxiety got so out of control I was having constant panic attacks and this only added to my pain. Thank God, my pain psych, who was not in it for the money, told me "you look terrible" and that I needed to listen to my body. He suggested, actually demanded, I stop all treatment. He called my PM doc and insisted that I be taken off of work due to a mental breakdown (from all of the stress of the appointments). He worked with me on relaxation techniques and changed my pain medication to get the pain under control so I could make better choices to manage this disease. This was probably the best advise throughout my ten years I had ever gotten. The appointments, injections, pt, ot, opinions, were actually making me sick mentally and physically.

I took a huge step back, I did get my anxiety and pain under control, and that was just the beginning to where I am today. I am not healed, but my life is much more manageable. I listen to my body even now, I know when I can push myself and I know when I shouldn't and I respect that. All I am saying is be sure that when a doctor asks Maddy to do a cartwheel with a round off... Maddy has every right to say NO. Your daughter has a great chance of remission, and that begins with her having choices, dignity and respect. Take a deep breath Mom, and ask God to lead you to the place that will best heal your daughter. God Bless you both,

Jeanie