Hi I just found this egroup tonight. Thought I would let you know that there is a Noonan Snydrome support group email and snail mail that is already active -has annual meetings-a newsletter etc. I dont have the website address on me right now but will try to find it. I have a very mild form of Noonans - it "didn't exist in the medical books" when I was born but I have a lot of the features etc. I also had pulmonary stenosis - had surgery when i was 18 for it. Also very small for my age. One of you mentioned the behavioural difficulties your son had. part of it could be his deafness -lack of communication and knowing whats going on. part of it could be frustration that he can't do things as easily as his friends can. Example- I can remeber my frustration DAILY at trying to get my lunchbox off the shelf. some wellmeaning student would always slide their hands along the lunchboxes pushing them against the wall- of course I spent a good part of lunch trying to get it where I could reach it !! Either that or ask someone who would look at me with a " well get it yourself!!" Being shorter means you have to constantly stretch to reach - means that you have to run twice as fast to keep up with others - and with PS you have even less oxygen and energy to work with. Having PS means that it takes twice as long to recover from running and any other exercise etc Example would be Physed - everyone else could relax until everyone was done running track (me) then they were fresh to run into the gym to change and then to class. I had no such resting time. took me the entire time ( 30 minutes)to run 4 laps then exhausted i would pant my way to gym and then to the next class. Usually took me 10-15 minutes to stop gasping for breath . and the first year I took typing -naturally I barely passed. Now since surgery I can walk 3 miles an hour !! Hope this helps. There are many variations to Noonans. Plus there is a lot of info and help you just have to know where to get it !! smile Shirley