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Re: h's kyphoscoliosis

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Hi ....

I don't know much about kyphoscoliosis, but I do know that the UCSF

scoliosis specialists (Bradford, Hu, Berven & ) are well trained.

People come from all over the world to UCSF for scoliosis treatment.

FYI, I run the scoliosis support group in San Francisco.

A brace, at this point, will probably not do anything for h

(assuming she's been determined to be skeletally mature). If she were

my daughter, I would probably get her out of the brace, and have her

continue with PT (hopefully a good one) for six months or so before

making any decisions. Another possibility would be to go back to

Shriners for another opinion.

Since you're already concerned about the financial impact, I would not

get sucked into any unproved alternative treatment. The Copes program

looks slick, but they have never published a single case of a skeletally

mature patient being permanently helped by their treatment.

Regarding radiation exposure, your daughter is actually way ahead of

many scoliosis patients who have had to have regular x-rays from a much

earlier age. There are definitely risks, but the only way to know

what's really happening with h is to have her x-rayed. The

frequency of x-rays should slow down once the doctors know what they're

dealing with. The good news is that UCSF is very good about protecting

the patient. X-rays are taken PA instead of AP (from the back instead

of from the front), and shields are used to protect breasts and ovaries.

Good luck.

Regards,

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