Sotos syndrome

[HHH3]

Had a call from the geneticist to day to say they're testing for Sotos syndrome in DS2 (3.6). Having read stuff I can see that he fits it in a lot of ways but I'm still not convinced. It seems children with Sotos are big for their age whereas DS is actually on the small side.

Just wondering if anyone knows about/has experience of Sotos?

Hi,

My 5 year old has Sotos Syndrome.

One of the best ways to learn about it is to join this Facebook group: www.facebook.com/groups/19241213821/.

You can also visit sotossyndrome.org/.

Feel free to message me if you have any specific questions.

Thanks for those links. Have sent you a pm.