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C P



Nov 19, 2002 - 2:38AM
San filippo Syndrome

Hi..I'm wondering if anyone can help me?

I am currently enabling someone with San Filippo Syndrome to access day services..... this appears to be quite difficult at times.This person is at stage 2.

I'm wondering if specific diets can worsen the condition i.e are there certain foods that should be avoided? or does this not make any difference? plus,do most people within stage 2+ go through great amounts of pain..can joints..hips for example get very painful..problems occuring? Coping strategies? kinds of productive/positive environments?I need a greater understanding..If you have experience in this area...any help would be greatly appreciated.I have looked at a couple of sites and although they are informative...they haven't really helped.
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