Hi C.,
I am so sorry about your grandbaby. She is too young to have to battle this!
I was twelve when I developed JRA. It started in my right knee and continued to my other joints slowly. Like your granddaughter, it took a while to get a correct diagnosis, and since I had no physical appearance of anything wrong I took criticism from both family and teachers who believed I was exaggerating and faking. I felt so validated later on in life when my grandfather got arthritis and apologized to me for his behavior and acknowledged the pain I had suffered.
For me the fatigue was just as bad as the pain in my joints. That is something to be aware of for your little one. Her energy level may be low.
Because my age was so different than hers I am not sure what advice to give you. I know my doctors encouraged me to exercise but with little success. Swimming is recommended and maybe since she is so young you can establish a routine that becomes a fixed part of her life. Of course get an okay from her doctor beforehand.
Even though this is a hard, hard thing, please look to the positive. She does not have cancer and will live through this. I had to tell myself this many times during my toughest days. Kids with arthritis can still be kids. And still be very happy.
I do have some hope for you! I outgrew my arthritis. When I was 27 I became pregnant with my son, and my arthritis went into remission. My doctor at CHOC had told me years before that this was a possibility although the correlation was unclear. That was eleven years ago and now and then I may get a twinge or two when the weather changes, but overall am still going strong. I still seem to want more sleep than most but have accepted that.
I hope she doesn't have to wait as long for hers to go into remission. Hopefully there are new strides in care than the medicines available to me. Just be there for her and give her love, which I know you do now. That is the best medicine of all.
I hope that I was helpful to you. I will pray for your little one and all of you. But know that you will get through.
C.