Hello I have been listening to what you have been saying for the past month now. And just wanted to let you know that I have noonans I am right now 23 years old. It has run in my family for years. What I don't like is that I can't even get information on the computer about it. well just wanted to let you know.
Hi everyone, we have an appt with the Geneticist on Thursday to do their little work up....Im wondering if anyone has had any experience with this and what...
we just had our daughter in a couple of weeks ago to see if we can track down a noonan diagnosis. They took a tiny brush and rubbed her cheeks for 30 seconds...
MessageThanks, I wondered if they would make us wait or not I hate waiting! ASD is Atrial Septal defect, PFO is Patent Foramen Ovale and PVS is Pulmonary Valve...
she was born with a webbed neck. They originally thought Turners but her Karyotype test came back normal. Than about 2 weeks after birth they heard a heart...
Messageowen has coarctation of the aorta too, his Karyotype also came back neg. they told me they really cant test for Noonans right now and they just have to...
I'm in Seattle. I am relying on the internet for help and support for my daughter. There is a lot of Turner groups out there in which parents and patients...
... withNS and im looking for an actice support group mostr of the people i email dont write back. I understand if you dont reply. I would like to get the...
what would you like to know I live in washington tri-cities. I have NS so I'll try to anwer any Qustons you have if I don't get back right a way it's because i...
I wanted to know how to sign up for the turner support group. At the time I now have support from a more active Noonans support group.But it would not hurt to...
MessageI will look into those groups thanks I was hoping that this one was more active I do understand tho that people other than myself have lives outside of...
I am a little disappointed as well with the lack of communication on this string but every little bit helps. keep chatting because the more people share the...
Hello I have been listening to what you have been saying for the past month now. And just wanted to let you know that I have noonans I am right now 23 years...
HI there, I have found numerous things on Noonan's, not many different things tho I just put Noonan Syndrome into my search engine and found things that way....
you can search the net under turners syndrom too and find alot of info that pertains to Noonan's as they are both very similar. Now that you are past you...
We have know for quite a while My Dad has it my older sister has it and now I have it. I am not sure if I had feeding issues or not my parents never told me....
Well thank you so much. well my sister had to have open heart segery when she was only 3 I can't remember at the moment of what she had. I think its my...
I will tell you what little I have learned. You may already know all of this but thought I would share just in case. Noonan's is a dominate gene therefore,...
I can probably come up with some info for u if you would like. Owen has feeding issues, he will not take anything by mouth so we have speech but it doesnt...
The information I have says 76% of Noonan babies have feeding problems. Pretty common. Kylie had a GTube at birth for a couple of days but that was because...
MessageI see, thanks for letting me know...how early was Kylie? Owen was a 29.5 wkr I had polyhydramnios (too much fluid) dr. never knew why well hello if he...
I was hospitalized at 32 weeks for dangerously low fluid, opposite you. We delivered at 35 weeks because she was starting to get stressed. Same thing with...
MessageIt was a definate scary time for us...Owen was "big" for gestation he was 3 lbs 14 oz. then dropped down to 3 lbs 2 oz still looked tiny to me anyway...
We are meeting with children's therapy this month to make sure she gets occupational and physical therapy early. Its is very common for Noonan kids to be...
MessageWe get PT/OT/Speech he doesnt really play with toys or roll over yet, he does smile occasionally he has laughed a handful of times he he turns his head...
Thanks! I think she is pretty cute myself. We got our Genetic study back and they didn't find anything conclusive. Now we don't know if we should continue...
Messagewhat kind of therapy are you starting? I know you said but I forgot lol Im sure you will do great! We are still waiting to hear something from our last...
Occupational and Physical. Not sure what that all means for a three month old baby but I am interested to find out. ... From: noonan_support@yahoogroups.com...
Messageour OT and PT just come and stretch him they also try to make sure his head is midline and that his hands are together he needs lots of help so it may...
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