Noonan Syndrome

6 replies

kiwisbird · 25/01/2004 10:38

Anyone else? My daughter is 15 mths and has mild form of it, just wondering if anyone else there has any experience of it...
xx J

OP posts:

Davros · 25/01/2004 11:01

Hi kb, I've never heard of it but am interested to hear how it shows itself if you don't mind doing a bit of education. BTW, where do you live and what sort of support do you get?

Lou33 · 25/01/2004 11:07

Hi Kiwi, no experience of Noonans I'm afraid, but would this be any help?

SueW · 25/01/2004 11:11

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beetroot · 25/01/2004 11:56

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Original poster

kiwisbird · 25/01/2004 22:10

Hi
I've got good medicals on the case adn am happy with everything, I would just love someone else to talk to and compare things with.
My DD was diagnosed on poor weight gain (at 15 mtsh she weighs 15lbs despite being born weighing 7lbs 8oz) she eats well and is happy little girl, she also has pulmonary stenosis which is a heart condition affecting her valve, not serious in her though and not impeding her in anyway.
I live in NE Hants and the care here is very good so far.

OP posts:

Luckymum · 26/01/2004 15:09

Hi Kiwi....have you tried 'contact - a - family' look here ?

Also this organisation and this one can put you in touch with families too.

HTH

Flip