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...
Hi everyone, Zack just had a chest x-ray and they said that he has a Bifid left anterior 5th rib. The doc said that it is normal and he should not have any...
You can only see it when he has his shirt off...it looks like a lump about the size of a quarter just above his left nipple. At first I thought it might be...
oh wow! I was just curious because Owen's rib cage is kinda funky dont know how to explain it good but it doesnt look normal I guess. Thank God it wasnt a...
Bone anomolies are definately noonans. Thank goodness it isnt a tumor! ... From: kwild1@... [mailto:kwild1@...] Sent: Wednesday, March 30, 2005 7:20...
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...
That is exactly what I thought about Zack's rib cage...it just didn't look normal. With his JMML diagnosis I have been thanking God that this was not a tumor....
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...
HI, what is JMML? Owen hasnt had any skeletal surgeries no one has mentioned anything at this time so with fingers crossed I hope he doesnt have to but while...
Hello, JMML is a rare childhood leukemia-Juvenile Myelomonocytic Leukemia. So far it seems to be a transient version, he has never had any treatments for it....
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...
Oh wow, Im sorry I hope he is ok....I see I thought that it was actual surgery we havent done that no one has said anything about it. the Geneticist said they...
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...
Good evening everyone, Things have been really rough here for the past 2 days. Zack has been extra spitty and I just don't know why. He has a GI followup ...
Owen has been on Zantac he did good on that then started outgrowing it then we did Reglan and Prilosec they so didnt work for him we have a script for Prevacid...
Hi. My name is Ann and I'm from Sweden. I have 2 daughters and one of them, Frida 2,5 years old, have NS. She used to vomit a lot, 10-15 times a day and it...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
