Posted by Susie
on 10/2/2009, 9:50 am, in reply to "Re: Mild PRS"
71.225.229.75
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
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: --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.
:
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