Hi - my name is Heather and I have a daughter Becky (9) with Noonan Syndrome. (There is some information about her at www.hnye.com) Looking forward to...
My Name is Kim and my Son Kyle(16) was born with Noonans. Well that was a dumb statement, of course he was born wit it, you don't catch it. Kyle is pretty...
... heart ... the ... this ... Hi Beth Nice to meet you. I am glad Zach does not have any heart problems. Kyle also had feeding problems. he failed to thrive...
Hi, My 7mth old son Bailey was diagnosed with noonans last week. It's a 2nd shock for us because he was also diagnosed with jmml (juvenile myelomonocytic...
Hi Lorraine, My 14 month old Zachary was diagnosed with noonans in mid-October. He also was diagnosed with JMML in October 2003. The doctors didn't think that...
Hi, My son Ryan 6 years old has Noonan Syndrome. We are going to have our first heart surgery on December 6th. He has Pulmonary Valve Stenosis as well as...
Hi Beth, I've just been reading Zachary's caringbridge page. I logged onto jmml webpage and saw one of your messages. How strange that you should be sending...
HELLO, I RECEIVED YOUR LETTER THROUGH, BEING ON THE NOONAN WEB SITE.I TO HAVE A SON WITH NOONAN SYNDROME/ HEART DEFECT. I WANT TO KNOW MORE ABOUT THIS JMML....
Hi Debra, JMML is juvenile myelomonocytic leukaemia. Children with either noonan's or jmml are more predisposed to getting the other we've been told. If your...
I would like to talk to anyone who has a child with Noonan Syndrome.My son Connor has NS, he is 11 years old and would love to know if anyone out there is...
my baby has noonans, so I cant be of help we just found out for sure last week.does your son have heart defects as well? Kirsten mom to alexandria 12, ethan 2...
I am someone with Noonans the younger years were the worse I still have some problems. which I don't care to talk about and even though I am an adult ...
how do you cope? I mean kids are mean..alot of adults too! I was made fun of and being someone who didnt have any visable problems that was tough. What did...
Hi I had a question for you. Your son is 11 yrs old. When did he get diagnosed with NS? How did he get there? I have an 11 yr old son who our doctors refuse to...
Hi, My son Ryan has NS, he is 6 years old. My son was dx as a baby by a genticist. He has Pulmonary Valve Stenosis, Woffle Parkinson White Syndrome, Hearing...
thats great advice! I was trying not to worry yet as Owen is 7 mos. but its good to know for the future. I have has several adults ask me whats wrong with...
I know your asking someone else but for us, Owen has heart defects, doesnt eat by mouth had lost weight AND he has facial characteristics of a child with...
Hi. My name is Ann and I live in Sweden. My daugther Frida has NS, she is now 2 years and 3 months old. When she was born and up to a year old they said they...
Thanks!!! Yes, she is very cute!!! *looking proud* And I think you're right, they do look the same in some ways! CFC is a syndrome very similar to Noonan, you...
Oh I see, I was also told that with Noonans, they sometimes get rashes easily. Im not a dr. lol but know what they told me lol. anyway Owen has curled up...
me again lol, it does seems similar to NS...I wonder if its "related"? ... From: Ann Gomér-Roslund To: noonan_support@yahoogroups.com Sent: Tuesday, December...
The genetics we went to says that in the future they will probably call CFC something like Noonan type 2 since they are so alike. They say that CFC is a more...
yes that is very interesting...I am very interested in learning more about NS. when we were at childrens hospital last week alot of the docs I talked to didnt...
Hi, My son's cardiologist has been watching Ryan since he was a few days old, and we found out he had heart difficulties, til recently we would have a check up...
Hi, So most people with NS has some heart defects I see. I have read that in the information I have. I see that here too. My son has one side of his heart...
Most people with ns has high blood presher I have high blood presher and has never taken meds for it. Havent had surgery yet eather on my heart I hope I never...
Hi, If you have concerns about your son's health, I would seek a second and even a third opinion. I have sought other opinions when I felt in my gut, that...
... Debra i have a son age 11yrs,he has been through a lot in the past years.Connor has a dent in his chest and is talking about surgery to make it better.He...
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