DS used been diagnosed with Noonans syndrome, anyone with any experience?

[missmapp]

DS2 is 2.10 , has pulmonary valve stenosis, is short for his age and has a deep curve to his chest, after being refered by his heart consultant to a genticist (sp?) on fri she confirmed noonans syndrome and thinks ds1 has it aswell as he has similar traits. We are not overly worried as it seems to really be a reason why he has what he has, but wondered if anyone else had dcs with noonans and any experience to offer.
Thanks

[missmapp]

sorry, title should say 'just' been diagnosed, I really should turn my brian on, Ive got work in the morning!!

[cleverlyconcealed]

I can flag your post up to someone who's child has Noonan's so keep checking back.

My dd has pulmonary stenosis as a result of another heart defect. Is ds to have surgery for his heart problem or is he doing OK without?

[Piffle]

My DD is 7 and has NS. I don't know if you are on Facebook but there are lots of us UK mums and it's fab for advice and support.
My email is [email protected]
Feel free to contact me about anything

If you have 2 children with NS are they looking into your and your DH as being NS as well?

My DD is doing extremely well as it happens, a few minor considerations (sometimes seem major but it could be much worse)

[missmapp]

Thanks both,

cleverlyconcealed ds' pulmonary stenosis is just being monitored at the moment, his last scan showed it was moderate so surgery is not need yet, consultant said it may never be needed( lets hope so) hope your dd is ok.

piffle Thank you, thats really useful, I am on facebook so will have a look. Glad your dd is ok, ds2 is fine at he moment aswell. They have talked about testing dh and I, but as we arnt planning anymore children it doesnt really seem worthwhile. Thanks for your email, thats very kind of you.

[Piffle]

If you just requested to join the group, my dd is the main pic, taken 3 yrs ago
we don't talk much there but if you add me I'm Jane B....nell I can point you toward the helpful folk!

DD had moderate to severe PVS at birth but this gradually reduced and she has had no treatment and requires nothing further aside from monitoring on a2 yrly basis.
She has terrible eyesight and a few fine and gross motor issues. But they were more magnified as a younger child.
How are you finding things?

[FnD]

ooh can I butt in - I have a child with leopard syndrome which I have been told is an offshoot of Noonans. Found out following heart condition diagnosis.

Again, apart from not being the most sporty and co-ordinated of people and sometimes speech which is a bit slurry, we don't ever think about the diagnosis.

Well, that and the fact that we have never met anyone with Leopard or Noonans.

[Piffle]

Wow that's a new one on me!

[FnD]

oooh - I was hoping I had found a door to the leopardy Noonans world! will have to keep looking...

[missmapp]

Thanks again piffle, I have joined the gropu so will add you if thats still ok.
We are still trying tof igure out what it all means, ds is only midly affected but I dont know if things will change as he grows up. I have terrible eyesight so both ds' are checked for that regularly, but are ok so far. Both are very short for their age, but hopefully we can istill confidence in them so they can take on the world!

Your dd is gorgeous, what a sweety.

[Piffle]

Thanks She is a sweety, really gorgeous, happy and kind and popular bright girl.
If I do say so myself
I looks forward to hearing more about your boys too and sharing notes!