Posted by nicola
on 10/6/2009, 11:34 am, in reply to "Re: Mild PRS"
86.1.182.220
hi ya my son is 4 months old and he has got PRSequence he has got the cleft pallet receeding jaw and tongue he has always slept through the nite i have to set my alarm to get to feed him and he is fed by N G tube he is starting his solids tomorow when his cleft nurse comes out we are very lucky cos we have got a good team of experts and doctors and i think if you try to get the right team of experts it would help alot cos with out our team i believe we would struggle i hope you have luck in finding someone i would try to talk to either a cleft specialist i know that theirs no cleft present but they are widley experienced in PRS all the best nicola and logan
--Previous Message--
: Is there a way you can get your son to see a
: craniofacial team? They can be very helpful
: in assessing issues that a less experienced
: doctor would not pick up on. PRS (at least
: in our case) runs across disciplines and we
: see a few doctors for our son's treatment
: including plastic surgery, ear/nose/throat,
: pulmonology. Seeing these different doctors
: can give you a more complete picture of what
: is going on with your son. Susie
:
: --Previous Message--
:
: --Previous Message--
: My son is now 16 months. He was diagnosed
: with a very very mild form of PRS at birth,
: i .e. he escaped a cleft pallet and
: breathing issues. Because of the mildness,
: I feel the doctors have overlooked his case.
: Even though over his life I have complained
: about discomfort breastfeeding(which I have
: worked through because I feel lucky to have
: him breastfeeding at all), difficulty
: getting him to accept solids and very
: frequent night wakings (up to 10 times a
: night).
:
: I can't help but think that these are
: related to the PRS....but I can't find
: anyone to validate my concerns. They keep
: telling me it is behavioural or he is
: breastfeeding too much!
:
: I live in an area where the doctors are not
: very knowledgable about PRS, but
:
:Hello. My daughter who is now three was born
: with pierre robin syndrom. I had trouble
: getting her to eat baby food, but she did
: have a cleft palate. My daughter has was
: two years old untill she slept through the
: night. I think that you should try seeing
: sleep doctor, also you might try to make an
: appt with a clepft palate dr, they deal with
: pierre robin often. my daughter had her jaw
: moved out and she doesnt really have trouble
: eating now.
:
:
:
:
:
Message Thread:
« Back to thread