Pierre Robin Network Message Central
[ Post a Response | Pierre Robin Network Message Central ]
Re: 5 YR OLD SON DIAGNOSED W/ PIERRE ROBIN SYNDROM AT BIRTH.
Posted by Rayni on 3/1/2012, 1:08 pm, in reply to "Re: 5 YR OLD SON DIAGNOSED W/ PIERRE ROBIN SYNDROM AT BIRTH."
My almost two year old son is about to undergo his 2nd hip surgery (with another 3 months of spica cast, ugh) due to right hip joint being more square than rounded, soothe hip joint pops out. We declined genetic testing since he is only child and adopted, but doctor at Scottish Rite said he has seen such hip issues with PRS kids. So, maybe femur issue is tied to the PRS. |
Good luck and please keep us posted on your son's progress!
: I hope your daughter is doing
: well...... My son has undergone 22
: surgical procedures..... I fell like I would
: not have done anything different. We are
: not sure what his diagnoses is as far as his
: bones because the doctors are going to wait
: untill his leg heals and he is walking
: again... Then they are going to do a bone
: density scan.. I will let you know what I
: find out.. and I would love for you to keep
: me posted on your angels progress as well.
: Thanks for the info.I'm going to bring that
: up with the Dr.
: --Previous Message--
: 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.
: --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.
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.
Hosted for FREE by Boardhost.
Create your own free message board!