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 1/2 , Owen 29.5 wkr. 7 mos.
ASD,PVS,PFO,Gtube, noonan syndrome
----- Original Message -----
From: "lynrob1726" <lynrob1726@...>
To: <noonan_support@yahoogroups.com>
Sent: Monday, December 27, 2004 3:55 PM
Subject: [noonan_support] Hi


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> 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.
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> Yahoo! Groups Links
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