Noonan Syndrome Experiences


#1

Please share your experiences with Noonan Syndrome with the community.


#2

I am a grandmother of a child who was diagnosed with Noonan’s at about 1 year. Now 5 she is doing really well. She was bon with coronary stenosis and was operated shortly after birth. The first ten months were very rough because she threw up all the time and despite changing bottles and formula repeatedly, it was a terrible struggle. Her mother noticed that she was cross eyed and took her to an opthalmologist. He suggested she see a geneticist at Boston Childrens’ Hopspital where Noonan’s was diagnosed.

My daughter devoted herself to her the first three years, with weely physical therapy, occupational therapy, visits to kidney docs and every other kind of doc.
She was also prone to extremem emotional outbursts; however her daycare treated her with love and saw improvement as each month passed.

Now at 5, her biggest problems are: gastrointestianal, drooling which embarrasses her and some, but not terrible frequent extreme emotional outbursts. I should say they are still frequent but she is quickly mollified. She has worn butterflies (small braces) in her shoes to help with muscle weekness and that has improved greatly.

She is in a mainstream kindergarten and doing very well. So, in summary, she is a highly functioning five year old who has some digestive probems and muscle tone problems. Her heart has done very very well and surgery is off the table.

I wish everyone as much luck as we have had dealing with Noonan’s. It is not the end of the world,