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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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I want to make sure that this community is aware of the Amplified Musculoskeletal Pain Syndrome (AMPS) programs at Boston Children's Hospital (Harvard), The Children's Hospital of Philadelphia (University of Pennsylvania), and a few other hospitals around the US.
These evidence-based treatment programs use intense physical and occupational therapy along with counseling and are extremely successful. In one study, published in the Clinical Journal of Pain, out of 103 children with CRPS, 92% of children finished the program completely pain-free. Five years later, 88% were pain-free at the time of follow-up. Regardless of whether or not these kids fully resolve their pain, nearly 100% regain full function and return to school and normal daily activities. I just came here to post this to help parents so I can't post a link, but you can find the study on Pubmed by searching for "complex regional pain syndrome 1999 wallace" The inpatient portion is typically 2-3 weeks, but some children stay as long as 9 weeks. The program is customized for each child and constantly re-evaluated. Children's Specialized Hospital in New Brunswick takes patients up to 21 years of age, but most children's hospitals stop taking kids in their teens. I am not aware of any such program for adults that is truly apples to apples in their treatment plan, but some adults have built themselves a team on their own (with their rheumatologist, a physical/occupational therapist, and a psychologist) after doing their own research on these AMPS programs. A sample size of one or two does not constitute good evidence that this is effective treatment for adults, but children have extremely high chances of becoming pain-free. While these programs are at some of the best children's hospitals in the world, backed by some of the best universities in the world, they have not done a good job of marketing AMPS programs. Patients/parents, and physicians have a hard time finding them (if they ever do). Here is a list: Massachusetts Boston – Boston Children’s Hospital: Pediatric Pain Rehabilitation Center, Harvard University Missouri Kansas City – Children’s Mercy: Rehabilitation for Amplified Pain Syndrome (RAPS), University of Missouri New Jersey New Brunswick – Children’s Specialized Hospital: Pain Management (they take patients up to 21 years of age) Oregon Portland – Legacy Emanuel Randall Children’s Hospital: Pediatric Rheumatology Pennsylvania Pittsburgh – The Hospital at The Children’s Institute: AMPS Program, University of Pittsburgh Philadelphia – The Children’s Hospital of Philadelphia: Amplified Musculoskeletal Pain Syndrome (AMPS) Program, University of Pennsylvania |
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