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!!
Quote:
Originally Posted by Buckhorn24
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
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