Pam -

 

You should definitely get in touch with Nancy Naugle.  This page, at The Noonan Syndrome Support Group's web site, has info. about Chiari and includes Nancy's e-mail address: 

 

 

 

Hi All,

Just wondering how many NS parents out there have found that their kids
with NS also have a Chiari I Malformation. Someone had mentioned it to
me as a possible cause for my son's vomitting. I looked into it and
began to realize that it explained A LOT of things about my son. So I
asked his doctor about it and she ordered and MRI. Sure enough. He
has a Chiari I. We're going to see a Ped. Neurologist in 2 weeks to
learn more.

I am having an MRI and Genetic testing done, as well. I have symptoms
which suggest that I might also have a Chiari I. So... is a Chiari
Malformation linked to Noonan Syndrome? Or does he have the Chiari
because I have it and passed it down to him? Or could I have NS as
well, and just not know it? I guess we'll have to wait and see.

-Pam