CRPS Treatment for Children/Teens at BCH (Harvard), CHOP (UPenn), etc.
 

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

Wow! This is great! Wonderful that you found this!

From what I've read teens & children have a MUCH better chance of remission anyway, but this gives them more options to FIGHT!
Children & teens especially deserve that better chance.
My P.M. Dr. has CRPS and was put into remission as a young teen and what
a wonderful thing she has gone on to do!

I hope you have posted this on more social networks for people to find.
Do they have this info. on American RSD Hope and RSDSA?

It does seem to be true that children and teens have a better chance at remission, but equally, this method of treatment has never been studied in adults (that I can find). It's a shame because of the great results with kids (even as old as 21) you would think that someone would be trying to start a program for adults so that it could be studied and we could get valid data to compare to medications and the other treatment options for adults. If a 21 year old can get better this way, why not a 23 year old? Why not a 26 year old? But I am not a doctor...

The RSDSA has some information (a video of the program at CHOP, etc). I am actually trying to get more information to them.