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Additional procedures?

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My dd was very recently diagnosed and now we're facing follow-up appointments

for genetic testing (lab work and MRI). The thing is, dd is terrified of all

medical procedures, and I'm not really big on having her be a " guinea pig " for

the research for the diagnostic center.

The only reason for the testing (other than research purposes) that could be

given was to look for a certain mutation of a gene, which may indicate that she

MAY be at a higher risk for certain types of cancer as an adult (breast cancer,

ovarian, etc). When I asked if knowing she was at a higher risk would open up

avenues of prevention, of course the answer was no.

Additionally, we've already gone to one of these appointments (which is 2 hours

away and requires me to take dd out of school each time), only to find out that

the wrong order was given by this same doctor. He was supposed to have ordered

the procedures be done under sedation because of her anxiety, but failed to do

so. In fact, it was scheduled so late in the day that the sedation department

had closed, and dd refused to allow the procedure to be done. In other words, it

was a wasted trip.

I am leaning towards not having the appointment rescheduled, regardless of what

the doctor thinks. Does anyone out there have any advice?

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