Hi! My 11 yo daughter was diagnosed recently with RND/RSD Stage 3 in her ankle/foot/lower leg. A three phase bone scan revealed very littlle blood flow below the knee. In the last 2 weeks, it appears the RND is spreading to her hip. She cannot walk or handle any weight being placed on the ankle.

She is taking neuontin and was rx'd tramadol. She has started physical therapy and is getting a soft leg cast after each treatment to keep her foot at the proper angle at night.

I KNOW PT is the best was to knock this into remission. Her first session was basically just touching her skin with different types of stimuli. Her second session (different therapist) was what I would consider (yes, this is coming from a mommy) barbaric. The therapist started flexing her ankle with great force, rotating her ankle, 20 min of heat therapy followed by 20 min of ice therapy, tried to have her weight bearing and strapped her ankle into an exercise bike to rotate the ankle.

Our little chicka is one tough cookie, but that was just too much. We were trying everything to keep her from passing out. We want to do everything we can to help her, but I can barely bring myself to take her to her therapy appt today.

Is it standard protocol to that intense therapy in the second session? I thought ice was bad for RND/RSD (she completely lost it with the ice on her skin)....Is that standard?

Has anyone tried Calmare? I have been researching non-stop. I know it may not be a 100% solution, but if it can help reduce the pain so she can handle physical therapy, that would be a huge step in the right direction.

We are located in Northern VA and have had little success finding any pediatric specialists for this condition.

Any advice/suggestions/answers would be greatly appreciated. I can not even imagine what my daughter is going through. Having her look me in the eyes and begging me to make the therapist stop hurting her was almost too much...

Thanks!