--- In noonan_support@yahoogroups.com, "Beth" <zack082503@t...>
wrote:
>
> Hi,
>
> My name is Beth and my son Zachary was just diagnosed with Noonan
> Syndrome this past week. He is almost 14 months old. He tested
> positive for JMML at 2 months old but so far it is transient. We
> have a cardiology appt. coming up but to date has not had any
heart
> problems that we know of. I still don't know much about Noonan
> Syndrome and am wondering what we are going to be dealing with in
the
> future, both near and far. Zack does have feeding issues - FTT,
> reflux and allergic colitis.
> I have a website set up for him: www.caringbridge.org/pa/zack
> Hope to get to know you and your children and learn more about
this
> syndrome.


Hi Beth
Nice to meet you.
I am glad Zach does not have any heart problems.
Kyle also had feeding problems. he failed to thrive and has had 8
hernia operations. He also had problems with his ears draining due
to the way they sit. He is still small but with technology now we
are going to help him out a bit with growth hormones and putting
devices on his long leg bones to help out. If you ever need to talk,
or have any questions let me know.

Kat(kim)
>
> Beth