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Julie's Website

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

AKA, Julie's "wrap"

Julie's theratog wrap from the front...

...and her wrap from the back.

In hopes of helping Julie with her back pain, we started wrapping her torso in ace bandages as a way to both give her support and cue her trunk muscles to work.  The ace bandages seemed to work pretty well and then the Variety Club finally approved our request for Theratogs.  Insurance denied them and Variety Club in our area will pay for equipment that the PT/doctor recommends that insurance denies.  Theratogs come with a whole system for strapping, including a vest and shorts, however Julie will not tolerate a whole strapping system.  So the PT and I improvised this set up instead.  I cut the shoulder straps off the vest pieces and it wraps around her torso just as you see it here--from her nipples to the bottom of her hypotonic belly.  She stands noticably straighter with the wrap on and her hypotonic belly sticks out less as well.  The PT sees some minor functional improvement, especially in balance, when she wears them and I hear fewer complaints of back pain.