Posted by Lucy
on 10/25/2010, 10:11 am, in reply to "We've got to get her mouth open!"
78.150.56.190
We have just had 3 sessions of cranial oestopathy. It has had the most amazing effect on our sons' ability to open his mouth and make his facial features more symmetrical. We were sceptical at first but after these first treatments I would seriously recommend it..everything is worth a try...
Lucy Oliver PRS 18 months trachy gtube
--Previous Message--
: My granddaughter is 29 mo, born with PRS;
: trach at 1 day (removed at 1 year old after
: 1st distraction worked), g-tube at 23 days
: until present. She has had 2 jaw
: distractions, botox injections into the
: massiter muscles, and now a 3rd surgery to
: clean out extensive scar tissue in both the
: jaw joints as well as her mouth, and extra
: bone growth in the jaw joints. The surgeon
: says we have a 50/50 chance of this last
: surgery working. He could only get her
: mouth open 16-18mm at surgery, and said that
: if therapy is not able to get her mouth open
: more than 15mm, they will have to retrach
: her b/c her airway will become compromised
: as the scar tissue again takes over and
: locks her mouth down. If this happens,
: they'll just wait til she's 6-7 years old,
: and start all over again! Our therapists are
: trying myofacial release, ultrasound, a
: dynasplint and extensive oral motor therapy,
: but for all our hard work, she's still not
: really opening her mouth. She's quite
: orally traumatized at this point, but she's
: willing to work and is really trying but her
: mouth is just not opening. She wants to eat
: so badly, and tries everything we give her,
: but she's a huge choking hazard at the
: moment, so we are at Stage 1 level (pureed)
: foods. She also wants to talk, and you can
: tell she is trying hard to open her mouth to
: speak.
:
: I don't know what to do next. I DO NOT want
: her retrached as I think this would be a
: HUGE setback for her. Anyone have
: experience with this that could encourage
: us?
:
: We will be getting a second opinion before
: we retach her. Any encouragement or
: suggestions of surgeons/facilities would be
: greatly appreciated!
:
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