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Noonan syndrome diagnosis help

2 replies

bados · 11/03/2020 19:46

Hi everyone,
I'm really hoping to get some advice for our 3 year old DS.
We strongly suspect he has noonan syndrome.
From the moment he was born we noticed he had very "unusual" looks - curled up ears, an extremely flat nose (no bridge), large droopy eyes and a very defined top lip. We have wondered non stop over the last 3 years where he got his looks from as he looks nothing like us or his 4 siblings.

I recently stumbled upon an article about genetic mutations and when I read about the facial features of noonan syndrome everything just clicked into place! I couldn't believe it.

So I've seen the gp who had to Google it and immediately said she thought he was fine. But I insisted so she is referring us to a paediatritian.

My question is, what's the best way to get a diagnosis? I'd like genetic testing but don't know how to go about doing that?

I would really appreciate any advice from anyone who has experience with this - feeling so overwhelmed at the moment.
Thank you!

OP posts:
Embracelife · 13/03/2020 23:30

The paediatrician can order some genetic tests or might refer to genetics to do this. So you may need to be patient.... some can take a while...
Are there developmental issues ? Heart issues? Is it just the looks? Etc

Miamacel · 03/07/2020 19:17

I am thinking my 6 week old baby has the same. Just wondering how you got on with diagnoses with lockdown? Or you in the same boat?

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