My 12 year old daughter has recently been diagnosed with EDS, she also has(CRPS) Complex Regional Pain Syndrome, which use to be RSD and POTS. On Wed her right ankle subblexed and is now dystonic and subblexed. When her right foot became dystonic, we started her on Baclafin 10 mg. 3 x day. I am extrememly concerned that her tendons may contract given that her foot cannot be straigtened out. I am trying to find a physiatrist to see her, but of course it is next to impossible. Any suggestions, thoughts, leads? We live in Southern Ca.
Thanks so much.