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Erlers-Danlos Syndrome

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Erlers-Danlos Syndrome - April 25, 2008 2:44:20 AM   


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Joined: April 25, 2008
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Working with a 2.5 year old boy with EDS, severe form. Extremely low tone, weak and next to no ligamentous stability in his pelvis, hips or LE's. The orthopod suggested surgical stapling down the line, but for now we are hoping to at least get him creeping by age 3. He stands in Urias Air Splints, bilateral Benik knee sleeves, bilateral solid AFO's and my compensating for 50% body weight. He uses a Benik trunk orthosis. His skin is super delicate, so taping is out. We use a pool for 45 minutes a week in addition to PT, OT, DT and Speech several times a week each. Busy boy! He is very bright, too.

Do you have any experience in working with infants and toddlers with EDS?
What hope is there for kids with severe forms of EDS ever walking?
Any gait devices suggested?
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