Hi Beth,

I've just been reading Zachary's caringbridge page. I logged onto
jmml webpage and saw one of your messages. How strange that you
should be sending me a message at the same time!!!

Bailey also hasn't had any treatment for his jmml and even thou I
would love him to be one of the transient children, I don't think I
could cope with the constant worry that one day it would progress
into aggressive jmml.
Do you know where I could find out more info about the 10% of
children. Our consultants have never mentioned it to us, just
Benedicte (Thomas's mum). If I knew abit more about the facts and
figures maybe I could rest more easier.

That would be great if you could get me a growth chart. I will e-
mail you my home address if you manage to get one.

Love Lorraine xx
Mum to Bailey (7 mths, jmml and noonan's), also Charlie (5 yrs)
www.caringbridge.org/ok/bailey

--- In noonan_support@yahoogroups.com, "Beth" <zack082503@t...> wrote:
>
> 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