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...
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...
Hi Beth- So far Kylie hasn't had feeding problems so I'm not a lot of help there. The information I have on feeding shows that it should be out grown so for ...
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...
Kirsten, This is a really cool site. I too have done annual fundraising in my neighborhood for the March of Dimes Mother's March since Zack has been born. I...
HI, thanks I didnt know you could make a personal site lol I was thinking about going around my neighborhood Im not having alot of luck with donations I...
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...
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