Hi Dr. Cottle,
You helped me two years ago when my mom was having brain shocks. She is well now. I am wondering if you can help me with a friend whose 12 year old son has been suffering with what some doctors believe is CRPS, since November.
Joseph has been in intense pain since then, immobile, on his stomach, not sleeping and barely eating. He has lost 40 pounds. He has seen 12 doctors and was diagnosed as having a rare form of CRPS by docs at UCLA. The meds do little to ease his pain. It is like he is being tortured. He wants to die.
A few weeks ago, the insurance company agreed to pay for treatment at Stanford. It is mostly a therapy to teach him how to deal with the pain without medication. His mother told me yesterday that the Stanford doctors now say it is not CRPS because it is effecting his entire body and is not localized in one limb, which is usually the case. However, from my research, CRPS in the latter stages can effect all muscles, as is the case for Joseph.
At this point, the Standford doctors say they do not have a diagnosis. The family is at a loss for what to do. They don't know whether to stay and get therapy for Joseph and take him somewhere else where he might get a diagnosis.
What is amazing to me is the Stanford group does NOT include a neurologist. A neurologist has not examined Joseph yet at Stanford.
I was hoping for your viewpoint. What do you recommend?