Mucopolysaccharidosis

I have come across a very rare condition of Mucopolysaccharidosis that a patient girl with 17 years of age. Mucopolysaccharidosis is a rare condition in which there is defect in metabolism of starch with resutant deposition of starch in the tissues of body like musculoskeletal system, nervous system and other systems of the body. The patient is bed riden, with deformities of upper and lower limbs, muscle wasting, contractures, spinal kyphoscoliosis deformity. What is physical therapy treatment options for that patient apart from doing, ROM exersises, strenthening, joint mobilization, splinting and functional mobility, appliance modification and gait traning?

dear sdkashif,
There are no guidelines. I would suggest that apart from what you are doing, give her massage (orteach her parents how to massage her), treat her with heat packs.
she might very well be in pain and this will inhibit all movement.
Adding heat or massage or treating her with kinesiotaping will not change her disorder but it might bring some relief.

Wishing you all well.

Esther