theratogs for a child with Rett Syndrome

Does anyone have experience of using theratogs for children with Rett syndrome. I am working with a 16 year old girl who has very limited active movement. Her mom found out about using theratogs from a parent chat forum and has requested to try. I need to feel confident that there will be a good reason to use. I would appreciate any input. Thanks

Hello Kidzpt,

Nope, no experience with TheraTogs AND Rett but with TheraTogs and trunkal hypotonia.

Looking at her age (16) and her size respectively I wonder whether she will have any major positional benefit from wearing them, e.g. a more stable and erect trunk in sitting.

I wonder whether this makes good for the considerable effort of customizing, fitting, repeated donning, re-fitting, washing etc. plus the elastic straps (which actually (used to ?) have little rebound) fizzle out pretty quickly.

Rather something for younger kids with milder presentation of hypotonia, ataxia and athetosis, both core and limb.

Hope this helps to discuss the pros and cons with the mother,

Cheers,

Henner

Thanks for the reply Henner, that helps.
I have my doubts about the value for this particular child. She also has a rod for scoliosis and windswept deformity.

I have not used theratogs at all but now thinking they would be of good value for a 5 yr old with very low tone to help give position awareness and sense of stability. He does not yet walk independently, but I feel has the potential.

Any comments?