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need info on new technique/crouzon

PostPosted: Thu Aug 12, 1999 9:12 am
by jennifer
i have a beautiful five year old daughter that has been
diagnosed with Crouzon. her doctor says that she is a good
candidate for a new procedure called distraction osteogenisis. if
anyone has any info please poston the discussion board.
thanxxxxx!!!!

Re: need info on new technique/crouzon

PostPosted: Mon Aug 16, 1999 5:52 pm
by sandlos@golden.net
My 6 yr old with has had the Ilizarov procedure done 5 times.
I believe it is a form of distraction osteogenesis. The jaw is
partly fractured on both sides, and "screws" inserted
above and below. We turn the screws daily with new bone growing
the gap as we force the jaw apart. Does this sound familiar? We
have it done at the Hospital for Sick Children in Toronto. My son
has Pierrre Robin with an extremely small mandible that showed no
catchup growth. We've had good results from the surgeries and are
hopeful that his trach and g-tube will be removed in the next
year. You can respond here or e-mail me at home... Debra

Re: need info on new technique/crouzon

PostPosted: Sat Feb 05, 2000 7:42 am
by Crouzon Support Network
Jennifer,
The Rigid External Distractor can be seen at
<a href="http://www.crouzon.org/redsystem.html">http://www.crouzon.org/redsystem.html</a> My daughter
had this procedure done at Medical City, Dallas by
Dr. Jeffrey Fearon. It is unbelievable...we are
very pleased with the results of her LeForte III
w/ the RED System (Rigid External Distractor)