--- In noonan_support@yahoogroups.com, tahlia lovell
<tahliacoral@y...> wrote:
> Hi
> My 3yr old has NS. He was diagnosed at birth because we were lucky
enough to have a Geneticist in the hospital at the time. He has
lowered ears, had a webbed neck(he now has grown into it) & the broad
chest. He has no heart conditions or much else like NS other than
developmental delay.
>
> Does your son have developmental delay? Have you seen a Geneticist?
Have they given you any other diognosis?
>
> Aussie NS.
>
> MY SON SAW A DEVELOPMENTAL PEDIATRICIAN LAST WEEK. SHE SAID HE IS
DOING FINE EXACTLY WHERE HE SHOULD BE FOR 6 MONTHS. YOU SAY THAT
YOUR SON HAS GROWN INTO HIS NECK? THEY SAY MY SON HAS A SHORT NECK,
WHATEVER THAT MEANS. IT IS WEBBED THOUGH I HOPE HE WILL GROW INTO IT
TOO. HE HAS SEEN A GENETICIST BUT WE LEFT THAT APPT. WITH HIM NOT
BEING ABLE TO DIAGNOSE HIM BECAUSE HE "LOOKS TO NORMAL". NOBODY CAN
REALLY GIVE ME ANY ANSWERS, AND IT IS REALLY FRUSTRATING. MASON ALSO
HAS BILATERAL HEARING LOSS THAT HAS GONE FROM A SEVERE LOSS TO A MILD
LOSS IN 6 MONTHS,YOU PROBABLY ASK WHERE IS THAT COMING FROM, I DON'T
KNOW, AND NOBODY ELSE DOES EITHER. LIKE I SAID NOOOOO ANSWERES
ANYWHERE.
> jlldamico <jlldamico@y...> wrote:
>
> I NEED SOME ADVICE. MY SON IS 6 MONTHS OLD AND HAS THE NOONAN
> ANOMILIES SUCH AS THE WEBBED NECK, BROAD CHEST, DOWN SLOPED EARS. I
> HAVE HAD HIM TO SEVERAL DIFFERENT SPECIALIST FOR EACH ONE OF HIS
> ISSUES. TWO STUDIES WERE DONE AND THEY WERE BOTH NEGATIVE, FOR THE
> NOONAN SYNDROME. A CVS WAS DONE AT 11 WKS OF GESTATION THAT WAS
OK.
> A THIRD FISH STUDY WILL BE DONE. ANYONE OUT THERE WITH A SIMULAR
> SITUATION THAT COULD SHED SOME LIGHT.
>
>
>
>
>
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