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 noonans, low set ears, wide spaced eyes, wider forehead, small chin, etc. There is no way to test thru chromosome testing for NS, but the way it was explained to me is if they have A,B,C, and D then you can be almost sure that its Noonans.  And also not all kids have all the list of things too. I would definately push for the doctors to do something, I kept telling our doctors that something wasnt right with him I knew it from the day I found out I was pg lol. and in the nicu, I told the nurses that his ears didnt look right but they "assured" me everything was just "fine". Anyway, good luck! Kirsten, mom to alexandria 12, ethan 2 1/2 owen 29.5 wkr 7mos. ASD,PFO,PVS,GTUBE,NOONAN SYNDROME

----- Original Message -----

From: Jacqui Thomas

To: noonan_support@yahoogroups.com

Sent: Tuesday, December 28, 2004 12:30 AM

Subject: Re: [noonan_support] Hi

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 refer him out to get help. There are so many similuarites of NS that my son shows. WE are at a stand still for a indefinate amount of  time. Im not sure where turn with him. I have stayed with the Noonan support group cause I can relate so much with this group. 

Just wandering

 

Jacqui

lynrob1726 <lynrob1726@...> wrote:

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 going through the same things as he is
at the moment.He goes to a mainstream primary school but in August
he will be going to the High school,Connor gets extra help with his
reading, writing and spelling because he has Dyslexia and Mearse
Irlin Syndrome, for this he uses a laptop in class and he also uses
coloured overlays when reading.Connor has Pulmonary Stenosis but at
the moment it doesn't seem to be giving him much bother. He has
Asthma which he takes a tablet and two inhalers for.Connor has very
dry skin mostly on his face, so his face always is very red.He also
has an eating disorder,behaviour problem, bowel problem which he has
to take medicine for.He takes pain medication every day because he
has very low muscle tone in all of his joints.Connor has had loads
of operations over the years and now he is talking about getting the
dent in his chest sorted,ears corrected, and he has one last chance
to correct the appearance of his eyes.He doesn't have any friends
and would love to talk to someone who has Noonans.Please contact me.
Lynda.   

Jacqui
mom of 4
Blaine 11yrs
Kelly 10 yrs ADHD, severe allergies, hyper to no end,
developmentally delayed, Special Ed class 6th grade(partial inclusion)
Shelby 8 yrs.. excellent daughter, super student, doesnt need to be reminded of anything :)
Aliya 5 yrs she knows shes the baby, Asthma

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