We've had the same problem and I've seen that many other parents here have said the same. To my understanding, it's typical of PRS kids. My son's was pretty bad for a while (maybe 40% delay). He is 19 months now, and has had physical therapy since he was born. He is doing much better and at his last review he was rated at 0% delay! Early intervention in key, the therapists are awesome. Sounds like you are doing all the right things! Good luck!
: hi,i was checking to see if anyone's child
: with pierre robin has any low muscle tone
: issues. my son is 5wks old & has a mild
: case of pierre robin & when he was
: having a follow up visit with his feeding
: specialist she noticed that he had a
: slightly low muscle tone in his neck and
: torso. he is able to move his head side to
: side and lift it up when lying on his
: stomach,but his neck tends to flop forward
: if not supported and his neck has to be
: supported to be held up. he just started
: going to physical therapy to help strengthen
: him up, i am just hoping that there is not
: some other underlying problem. i had an
: amnio,FISH test,cgh array,fragile x &
: sma tests done while i was pregnant &
: all came back negative. has anyone else's
: child has this issue with the muscle tone?
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