The ball is in our court, so to speak, so I'm
inclined to ask to test for Noonan's, but hesitate since her symptoms
are not severe and apparently the tests only identify something like
50% of the kids with it?

I encourage you to speak to a geneticist about testing; there have recently been two more gene mutations (KRAS and SOS1, in addition to PTPN11) found for Noonan Syndrome so more people with NS can now be identified.  If she definitely has it, she is at higher risk for things like blood coagulation problems - which can be important to know about.  Also, you may want to join The Noonan Syndrome Support Group ListServ (go to www.noonansyndrome.org for more information) - that group is much more active than this one.

 

Marla