Hi Michelle,

 

Our sons both have many characteristics of Sotos - except they have a round face & do not have advanced bone age.  The next test being run is for the PTen mutation - Bannayan-Riley-Ruvalcaba Syndrome.  I know what you mean about wanting an answer - doesn't really matter what it is, just give us something.  I'm keeping my fingers crossed that you have some answers soon.

 

btw our sons are 5.5 & 8 mths ... once the balls starts to roll, it just keeps going (at least I hope so) ;)

 

Krystal

 

>Message 2
>   From: "waltnchelle@..." waltnchelle@...
>    Date: Fri May 19, 2006 5:59pm(PDT)
>Subject: Re: Digest Number 208
>
>Thanks Krystal.  We are waiting on my son's results to come back, but he have most of the characteristics of Soto's.  He's >almost 5 and we still don't have an official "syndrome" or diagnosis.  I would love to find out what is "wrong" with him...just so >I know.  
>
>Thanks,
>Michelle