Welcome to Neuro Talk. I know what being a worried mom is. Have you gone to see neurologists that specialize in RSD? Also their is a field of medicine called a Physiatrist. They try integrative medicine, and think somewhat outside the box. Mine, has pain as her first priority, then she evaluates all the rest. If you visit the RSD CRPS forum, you will hear many of the symptoms that people experience. I am not a professional, but there are some very smart people here on Neuro Talk. Mrs.D, and our moderators may be able to direct you too.
I really hope there is a resolution to your daughters illness. Keep posting, you will get more replies. Has any medication been prescribed for your daughter?
There are hospitals such as Mayo clinic, and most teaching hospitals, that can do a broader range of dx. Someone on this site may have more that may help. I will keep your family in my thoughts and prayers. ginnie