I forgot I am 24 years old and has NS I don't have a lot of facial features but I do have a few like webed neck and pointed ears wide eyes mostly I have the...
well I was the same way when I was his age let me tell you something I still don't want to keep them on. well I have a problem with my mucles in the eye they...
well I do not have a son but I have pulmary stinosis they told me when I was a kid that I would need heart surguary but they were able to hold off still don't...
Oh that is excellent news!!! My son didnt walk until 14 1/2 mos old and my daughter didnt start to walk until she was 22 1/2 mos old they both have NS. ... ...
Yes, my son has Nystagmus which is jerky movement of his left eye. He has to wear glasses on occasions, not all the time. My daughter has a visual perception...
Well thats good yea I have to wear mine all the time I just changed Eye docs since my last one is not telling me nothing I keep asking ?s and he just avoides...
Hi again Group, Sorry it has taken me so long to reply, especially to Amanda. Lachlan recently underwent major surgery for an RVOTO (Right Ventricular Outflow...
My daughter Hailey was diagnosed with the triple x syndrome and now the doctor is sending us to a genetisist to run more test because at first he thought she...
Hi and welcome to the group. Yes Noonan syndrome can be tested by a blood test. My son Connor who is 13years old now has Noonans, he has been tested for...
Hi - Welcome to the group! The blood test is fairly simple - takes about 3-6 weeks for results. Aaron was tested for Jag-1, 22Q Deletion Syndrome and Noonans....
Hi and welcome to the group!!! My daughter wasnt going to be tested for Noonans at first. She was going to be tested for (CCD) Cleidocranial dysplasia which is...
I am curious about the Autosomal Dominant aspect of noonans. How many parents test for noonans and come back positive after they test thier children? We are...
Hey Sorry I have to talked in awhile my name is Ken Lhamon and I am 25 and has NS I went to the Docs in early Nov and he told me that my muscles are pulling...
Ken, I am so sorry to hear this. I wish there was something I could do to change things for you. Please feel free to reach out whenever you need a shoulder to...
My sister has a 14 year old son who has Noonan's and has had problems in this area, he is quick to get aroused (what 14yro boy inst you say) and has had some...
My son is only 2 1/2 so I can't say from experience with Noonan's. I can say that he sounds like a typical curious 14 year old boy. Has she talked to the...
... say) ... which ... as ... I have a 13 yo daughter and she has shown no intrest in boys, we have followed her condition over the web and special groups for...
Thank you so much for the info. I haven't been able to find anything online that supports this as a symptom. Unfortunately, it sounds like it just another...
I just joined this group in an effort to learn more about Noonan's syndrome, which might be a fit for my daughter. I'm sure many of you here are familiar with...
my 5yo grandson has noonans,I don't know a heck of a lot about it other then what I find on the internet and thru my daughter.He seems to be a healthy boy.He...
Hello I am 25 years old and have very poor eye sight and glasses aren't helping they say my muscles are pulling apart and doctors are not sure why I was ...
Hi - Welcome to the group. Many of the characteristics of Noonans can mimic other genetic conditions. Like for instance our son was tested for 22Q Deletion as...
Yea I know I was put in the hospitl about 6 months ago and most of the doctors did not know what NS was so one of them went home and looked up info and found...
There is another syndrome out called Leopard Syndrome. I do not know alot about it - save for the fact that many of the characteristics mirror Noonans...
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Could you explain the heart thickening? My son's heart had lining separating the two sides of the heart get thick. Maybe the rest did too but we don't know....
Well I can't stand the cold or the hot my parients turn the heat on to about 65 and I am always cold so I turn it up and they turn it down. but then when its...
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