Posted by Aura
on 1/21/2012, 7:30 am, in reply to "5 YR OLD SON DIAGNOSED W/ PIERRE ROBIN SYNDROM AT BIRTH."
72.196.213.189
Nicole,
My daughter is 5; she was diagnosed with Pierre Robin Sequence. She has a trach since she was 3 months old as she also had lower airway malacia- that seems to have gone away 2 years ago. Her tongue size and jaw position combine to cause severe sleep apnea, so she still has a trach, which is capped when she is awake. We opted not to have mandibular extraction. We learned last year that our daughter might have the bone disease called fibrous dysplasia - is this what your son has? If so, what have you learned - our daughter is undergoing more testing to determine the extent - the diagnosis was based on a CT of her head.
Wishing you well.
Aura
--Previous Message--
: MY SON WHO IS 5 NOW WAS DIAGNOSED AT BIRTH.
: HE HAD A MANDIBULAR EXTRACTION IN JANUARY
: 2010... WE THOUGHT HE WAS OK NOW.. HE STILL
: HAS SEVER SLEEP SOMEWHAT WHICH CH WAS
: SUPPOSED TO BE CORRECTED BY THE EXTRACTION
: BUT WAS NOT. WE ARE NOW FINDING OUT THAT HE
: MAY HAVE A BONE DISORDER. HE BROKE HIS
: FEMOR IN AN UNUSUAL PLACE 2 WEEKS AGO. WHAT
: TO DO. HE HAS HAD 22 SURGICAL PROCEDURES IN
: HIS SHORT 5 YEARS.
:
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