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 probably wouldn't have to do any heartsurgery on her, but then it changed, her heart started to get bigger and in mars -04 she had her surgery for pulmonary stenosis. It went pretty good, exept they had to open her again two weeks after to take all the extra fluid out. :-(
Frida has a Mic-key for feeding, but she eats some depending on if she's well or if she has any viruses. Every time she cathes a cold she stops eating completely, so we are very happy the Mic-key is there! :-)
She has had one operation for ptosis on her left eye but it didn't work so they will do it again sometime next year I hope.
Frida looked quite special at birth so the doctors started to talk about Turner syndrome, but as I had done tests during pregnancy, that was sorted out directly. After that Noonan was mentioned and that is still the most probable diagnosis for her. We have looked a little on CFC also but we still think NS is closer. They tested Frida for that NS test you can do but it turned out negative, but that happends in about 50% of all NS cases she they can still have the diagnosis.
I saw the wonderful picture of Owen that Kirsten sent som I'm sending you a picture of Frida too, taken in daycare a month ago. It would be very interesting to more pictures!!! :-D
/Ann, mom to Fanny -99 and Frida -02 (with Noonan syndrome)
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...
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...
Hi um my names Jenn. I was diagonsed with Noonans at a little after birth. My mom noticed I wasn't going as fast developmentaly as my brothers, and so did my...
Hi Jenn, How did the doctors decide you have NS? Are you sure you have Noonan's? Soundslike you might have Turner's. VERY similar but Turner's has the ...
Low-set ears with thickened helices that's what I have. I had a blood test to find out that I did have noonans as a baby. I was in the reference range for...
did you ever have ear infections and if so how frequent? I have an 11 yr son who they suspect NS but for some reason they just cant make up their mind on the...
Hi, Jacqui, Tom has recurrent ear infections-and they perforate too-first time at 12months and twice since-last time both ears! VERY painful-he screams!! Each ...
Linda I was told from birth that ear infections are common among infants. Well when kelly was 2yrs old, he had his first set of tubes. By then he had about 50+...
Welcome Jenny that's great that you are graduating from college I never went to college cause I never did real well in school. They think its from N/S and...
Have they mentioned anything about the Mastoid Bone? My nephew doesnt have NS, but lots of allergies ear infections last year the bone was taken out and he...
Hi welcome! My youngest son has NS, heart defects, feeding issues etc. He is not growing well he has been at around 26 inches long for several months now no...
Zack has been 26 3/4 inches for several months now too. His doctors say it's ok because of the NS. He has been to an endocrinologist who is against growth...
Hi My grandaughter is 9 months old. The genetic doctor says that NS respond really well to growth hormone and can help they reach a normal short adult height....
Are you and your family considering growth hormones for your grandaughter? I have a six year old who has NS but I am not sure about the hormones. We see our...
Oh ok thanks! We havent even talked about growth hormones yet I think maybe Owen has more going on than what we know yet. How is your granddaughter doing? ......
HI, I was tested when I was a baby. I was diagonsed with Noonans before I was a year.I velive there were things they did. I was a very sick baby I had tons of...
can u explain what you mean by your ears have the flap thing Jacqui Jenn Lynn <gwen_vere@...> wrote: HI, I was tested when I was a baby. I was diagonsed...
NS and TS are almost exactly the same. The MAJOR difference is in TS, girls do not develope secondary sex organs...as in your case. The difference with proof...
I have a six year old little girl with NS but we are not at that stage in life yet. Wendy Scott n' Ashli <scottpetitt@...> wrote: NS and TS are almost...
Im confused. I have ovaries, and a uterus. The only thing I don't have is a working pituitary gland due to the misalingment in my brain. Jim Moseley...
Oh ok thanks, Im not sure if thats going to be the answer for us or not and no one has mentioned it anyway its interesting to see what other people have done...
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