Can anyone out there provide feedback, positive or negative, on intensive pediatric pain rehab programs?

My 13 y/o has been the the Mayo Clinic program in Minnesota and it was very helpful for her. She had a huge increase in functioning (going from crutches to a nearly normal walk). However, 3 months later, her CRPS has now spread to her hand/arm. We may return to Mayo and I am sure she would regain use of her hand again, however I have some reservations. I question whether they did enough aggressive PT/OT with her. They have a full day program in which the vast majority of the time is spent in psycho-educational classes. She had 1 hr of PT per day and her OT sessions were mainly focused on lifestyle management, rather than desensitization. I do think all of this was very helpful to her, however, she still has not regained full functionality in her leg, and now with the spread to her hand, I'm wondering if a program with more aggressive PT/OT would be the best next step.

I WOULD BE SO GRATEFUL TO HEAR YOUR EXPERIENCES.

Lori,

I don't have first hand experience. But there is an RSD pediatric physician at AI dupont. Dr. Alexander. There office states he is very good, but I do not know first hand.

many others have gone to st. louis childrens hospital. Hopefully, they will give you feedback as well.

My 13 yo was diagnosed in March with it in one foot but it then spread to all four limbs and was on crutches for a while. She spent two weeks in Pittsburgh at Childrens in therapy in May because Philly had a long wait time. Her pain went down while there but came back with vengeance after she left. It spread to her chest, tailbone and she's still in level 8-10 pain in all limbs. She does aerobic or pt every two hours every day and it's not getting any better and high school starts in 6 weeks.

So yes, the intense therapy did help while she was there and lasted about two more days after she left, but just increased after that. That's not to say it won't work for you, but there seems to be no killing, or even subduing this beast. Would be interested in hearing from others as well.
Mike

I have great things about Boston Children's Hospital, which is located in Waltham, Mass. The doctor that runs the clinic is Dr. LeBel.

The RSDSA.org website may have a listing of Children's programs. Call Jim Broatch at 877-662-7737 or send an e-mail to jwbroatch@rsds.org.

Good luck!!

I know someone who went to Boston children's hosp and did great. I can put u in touch w her if u want

Debbie

that would be great. What's the best way to do that?

I also still look forward to feedback from anyone else who has any.

Lori

Pm me your email address and I will forward it to the woman who took her son ....Debbie

Hi Lori,

My daughter had great success with Cleveland Clinic Pain program. I highly recommend the program. There is a Ronald McDonald house that you can stay. I believe I paid $40.00 per week. Wonderful families. If you need a link or contact information I can help.

There is a light at the end of the tunnel. Possible remission etc. The quicker you get your child into a program that can help them manage their pain the better off they will be as they mature.

I am so sorry this has afflicted your child it is a horrible thing to watch them suffer day in and day out, not knowing how to help them. They just don't understand why this is happening to them. You are in my prayers.

Sandy

My daughter has been to the Boston Clinic twice. The first time when she was 16 and the RSD was in her lower left leg. One year later RSD mirrored to her right leg and she was in a wheelchair for 5 months before we went back for the second time. She came home till in pain but out of the wheelchair. I would recommend this program for any child. Your daughter will meet other kids she can really relate too, Maddy still keeps in touch with her PPRC friends. Good Luck.

FYI, we tried to go to the Cleveland Clinic the second time because closer to home and hotel fees cheaper. We were denied by insurance because it is considered in-patient as Boston is considered out-patient. 3 insurance appeals and a visit to Cleveland for them to submit to insurance was taking just to long (3 months) called Boston and was able to get in 2 weeks later. The first week we were there our insurance granted Cleveland Clinic, just too late.

Both programs are great, I just felt the in patient would have helped my daughter manage/cope with her pain better. She has a lot of anxiety issues right not we need to deal with.