Noonan Syndrome (NS)
Support Group Introductions

Rothman, Jayne (as at 4/97)

Hi, my name is Jayne Rothman. I have a 26 month old son who was just diagnosed with Noonan's syndrome. Wanda sent me this message that I should introduce myself, so here it goes. I am married, (my husband's name is Alan) and Sandy (my son) is our only child. He is the most adorable child (people stop me on the street, in the store) and comment how adorable he is. Getting to this diagnosis has been a real odessy.

I have often commented that my son has been to see more doctors in his short life, than I have in my whole life time. Let's see, there's the pediatric cardiologist, pediatric orthopedist, ear, nose and throat doctor, pediatric neurologist, genetisist, and let's not forgot his peditrician.

Although he has been to a lot of doctors, he is in pretty good health. He eats well (though he is picky--won't he meat, poutlry or fish) and his pulminary stenosis is mild. His biggest problem has been his ears. He had tubes put in in August. He has a speech delay. He only has about 10 words (generously). He has been in a special program, 3-days a week, where he gets speech therapy since he was 20 months. Although, we have not seen much of an improvement in language.

Any advice?

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