Hi Lorraine,

My 14 month old Zachary was diagnosed with noonans in mid-October.
He also was diagnosed with JMML in October 2003. The doctors didn't
think that Zack had either Noonans or JMML either and then they
crushed my world when the told me he tested positive for JMML. Zack
has never gotten any symptoms of JMML since his flare up that made
them test for it. He has still not had any treatments and now that
the Noonan Syndrome diagnosis was made we are now in a holding
pattern waiting and hoping that he is in the 10% that get the
transient version. He has his blood counts checked every 3 months at
CHOP-Children's Hospital of Philadelphia.

I also looked for the growth chart for Noonan syndrome. It only
shows length/height. The pediatricians still use the normal growth
charts and his endocrinologist and geneticist use both to plot his
growth. Zack has a genetics appointment next week and I can ask them
for a copy of the noonans chart for you if you want and then I can
email or post mail it to you.

You and your family are in my thoughts and prayers - dealing with all
the news of both diagnoses in such a short amount of time is
overwhelming.

Talk to you soon,
Beth, mom to Zack 14 mo (JMML & Noonans)& Ethan 3yrs
www.caringbridge.org/pa/zack


--- In noonan_support@yahoogroups.com, "bailblue" <bailblue@y...>
wrote:
>
> Hi,
> My 7mth old son Bailey was diagnosed with noonans last week. It's
a
> 2nd shock for us because he was also diagnosed with jmml (juvenile
> myelomonocytic leukaemia) in July.
> His heart scan 2 months ago was clear and he's very much into his
> milk and solid food and most docs didn't think he had it by looking
> at him.
> He's always been on the bottom of the growth charts. I've heard
> there is a noonans chart. Does anyone know where I can get one?
>
> Thanks Lorraine