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Sotos Syndrome Anyone?

SpocklesSpockles member
in Special Needs

Anyone's DC have Sotos Syndrome? The Geneticist is thinking that DS has this syndrome on top of his Autism. 

Based on research that I was doing online prior to reading the Genetics report where she indicated the good possibility that DS has Sotos, I found this syndrome online and thought he fit the criteria and characteristics. I literally gasped when I read the report yesterday and she mentioned Sotos, since I had found that on my own several days prior.

Anyway, just wondering if anyone has any experience with this syndrome.

Thanks!! 

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Re: Sotos Syndrome Anyone?

  • AngelaU1971AngelaU1971 member

    Yes, Ruby (my 21 month old) has been clinically diagnosed with Sotos (no genetic testing yet).  She was diagnosed about 2 months ago.   She is really tall for her age (about 97th percentile) and they did a bone age test showing her bones are 3.5 years old.  Also she was late to walk (17 months) which is common for Sotos kids.  And she is slightly expressive speech delayed so she will be starting Speech Therapy soon.  Actually she's doing really well overall, and her geneticist thinks she'll only be mildly affected (I am hoping for this too of course!) 

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  • SpocklesSpockles member
    imageAngelaU1971:

    Yes, Ruby (my 21 month old) has been clinically diagnosed with Sotos (no genetic testing yet).  She was diagnosed about 2 months ago.   She is really tall for her age (about 97th percentile) and they did a bone age test showing her bones are 3.5 years old.  Also she was late to walk (17 months) which is common for Sotos kids.  And she is slightly expressive speech delayed so she will be starting Speech Therapy soon.  Actually she's doing really well overall, and her geneticist thinks she'll only be mildly affected (I am hoping for this too of course!) 

    Thanks for your response!

    DS is in the middle of genetic testing and they're suspecting Sotos Syndrome on top of his autism. He is "abnormally large" as the geneticist keeps telling us. He is really tall (off the chart), has always had a big head (off the charts), didn't start walking until 15 months, his eyes have a downward slant, his bones are aging faster than his age and he has the language delays, but that is also a part of the autism. At 2 years, 3 months DS is 36.5 lbs and 40" tall.

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  • AngelaU1971AngelaU1971 member

    Ruby has a big head too and i guess her eyes downslant a bit, but so does my husbands, so I just think she looks like him!  At Ruby's 18 month appt she was 34" tall and 30 lbs, not sure what she is now at 21 months. 

    It seems like more of the boys with Sotos have some autistic behaviors...I have read about several recently. 

     

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