Hello to everyone... I am writing because about 3 years ago my daughter developed more severe pain than normal.. A year ago she was told finally it was RSD.. She went through the program in Pittsburgh,PA for extensive therapy as per Dr. Sherry believes in.. She was home for two weeks and then started with inability to walk on crutches to w/c.. Nobody could touch her. SHe is 15.. Then within a few weeks she had dystonic movements we all thought it was a seizure.. Through admission to Cleveland Clinic and UPMC['s numerous times she was told it was in her head... I know it's not and that has caused her to get more depressed and anxious/frustrated.. Well, this is a short version/ she had a NG tube put in because now it is whole body dystonic movements.. It seems when the pain is unbearable the dystonia flares more.. She is on oxygen at intervals and bedtime.. She gets dead weight when the episodes accur.. We are treating in SOuth Carolina because nobody around here sees anyone under 18 or is unfamilier with RSD etc.. I truely believe it was the extensive therapy that caused the complications... If you look up complications of RSD it is what she has... Peripheral Arterial Disease , Dystonia, etc... I am very upset with the community not able to help at all and the drs around here unfamilier with the diseases.. The only thing now is she was told its not rsd after 1 1/2 years and that its psychogenic.. I wish that there was a given diagnostic test for proof... She would love to be a normal 15 yr old.. She never knows weather or not she will be in a w/c or walking.. or total care or able to do for herself.. She gets nerve blocks and numerous injections.. Sympathetic electrical blocks etc.. She has damaged nerves in her feet/ low back/ muscle weakness throughout her body/ vision trouble at times/ hearing problems amplified/she has had botox/myobloc for the contrations.. Any support or groups known of in PA?? I am at wits end.. Its costly and is draining us..i have been her caregiver for months now and unable to work.. Please any info or has anyone else had these problems respond
Betsy