Noonan syndrome Member Introductions


#1

Please take a moment to introduce yourself to the community. Everyone here has something to share about Noonan syndrome. For the discussion boards, we ask that you keep your full name and location private.


#2

I’m Meg and my 5 year old daughter has noonan’s syndrome.

We have since found out that the gene comes from my husband although he had been undiagnosed. Sophie is 94 cm and age five and the problems we are facing at the moment are all to do with her short stature.

She is beginning to realize that she is smaller than other kids her age although I do tell her that some kids are big and some are small , we are all different. I am going to have a meeting at school soon ( she is in year 1) as her pediatrician did an assessment that gave her a physical age of less than three.

I’m not sure how best to approach things as I don’t want to start singling her out, but if there are specific needs then I want them addressed.

Does anyone know about grown up looking adjustable chairs that are suitable for school?

Looking forward to discussing stuff.

M


#3

Hi - I would like to learn more about how I can help.


#4

HI,

I have 3 children, but my daugther, Catie, who just turned 5 has a clinical diagnosis of NS. We are in Texas.


#6

Hi my name is Nikki and I have a now 4 year old son Braxton who was diagnosed with noonans about a year after he was born i was devastated not knowing what it entailed.

He is just like a regular boy…into everything…we have embraced the condition and he is doing well he just about 6 months ago was potty trained and walking independently…i was just looking for someone who i could exchange emails with or whatever to learn a little more about this coming from a small town its hard to find other people who have children with this or know someone who does…feel free to send me a private message on my profile.


#9

Son born with Noonans. Want to meet others with children that have noonans and learn more about the condition.


#10

I am here to support my nephew who was born with Noonan’s Syndrome. I am “Livingsimplecolorado’s” sister. Thanks.


#11

I don’t know much about Noonans but my nephew has been diagnosed, and would like to learn as much as I can to support his development and journey through life.


#12

Im a mom with NS to 2 children with NS.


#13

my son has been tested for this syndrome and im trying to learn all there is about it we are still waiting for the results.


#14

Hi! My name is Madeline and our son Henry has been clinically diagnosed with Noonan syndrome. Henry is 2 1/2 years old. I am interested in everything relating to this syndrome. I want my little boy to be as happy and healthy as possible. I love learning personal life stories from others touched by this syndrome.


#15

My 2 1/2 year-old daughter, Elise, was diagnosed with Noonan Syndrome at the age of 18 months after a round of DNA testing ordered by her endocrinologist. She has a mild strain, exhibiting only a few of the common Noonan characteristics. Her characteristics include mild/moderate pulmonary stenosis and small stature.

The cardiologist is unconcerned about her heart condition, and only wants to see her every year and a half.

The endocrinologist is tracking her growth, which is at about 50th percentile for children with Noonan’s, although it is well below the 3rd percentile for normal children. We will begin discussions about growth hormones or IGF-1 (pending successful outcomes in clinical trials and FDA approval) when she is between 5 and 7 years old.

The pediatric geneticist doesn’t need to see her again until she starts thinking about having her own children.

Elise is a charming child and gets a lot of attention in public because she’s so tiny and cute. She walked late (19 months), and her speech is delayed but quickly catching up. The speech pathologist is happy with her progress and says that language delays are common with any child who has gross motor delays.

The early childhood specialists who we’ve worked with say she has no cognitive delays at all.

So - I’m interested in research that is being done about NS and I’m interested in staying grounded and balanced as a parent - to Elise as well as to my 8-year-old daughter and 6 year-old son.


#16

I have a grandchild diagnosed with NS


#17

I’m interested in this condition because I teach a prek child with this syndrome. He is hearing impaired, has aversion to food, is cute, but can be stubborn.
I’d like to get more info on how to help him get use to eating in school. He’ll turn five next year and will start a different class.
I’d appreciate any ideas. Thanks


#18

Hi,
I have a happy 5yr old boy who has Noonan Syndrome. He is totally crazy about music and loves to sing, dance and play musical instruments. It will be great to share stories with other people who are touched by NS.
Cheers Seahippie


#19

My name is Lynda, I am a single parent to two wonderful boys Lee 15yrs and Connor 13yrs. Lee suffers from Hypothyroidism and episodic Ataxia, and Connor suffers from Noonan Syndrome. I would love to chat with anyone who is going through the same things.


#20

I want to learn more about this condition because my son has Noonan Syndrome. I would love to connect with people who have been affected by this same disorder


#21

My son has Noonan’s and I like having a place to go with questions.


#22

Hi, My four year old daughter was diagnosed with Noonan’s last February. She also has Pulmonary Stenosis. I am here to learn more about Noonan’s and meet others with this condition.


#23

I have a beautiful, gifted son with Noonan’s Syndrome. He is the light of my life. I wouldn’t change him for the world. And I really do mean that.