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Hi Vanessa
My daughter Shannon aged 9 has a diagnosis of Unrecognised Overgrowth Syndrome. This means that although she shows just about every characteristic of Sotos, she does not have the right facial features. This confused me for a long while because individually she has everything that is mentioned - large prominent forehead, receding hairline, large head, down-sloping eyes, high palate - and I was sure the doctors were mistaken. Then I attended the UK Sotos conference and realised that despite having these features, she did not have the "overall Sotos look" just as the doctors had suggested. I now know that Shannon has a condition which is so rare, that as yet it has not been recognised or been given a name.
It is very frustrating not to have a definite diagnosis because you don't really know what the future is, but I have learned to take things one day at a time and in my experience all Shannon's problems have improved as she has grown older.
I belong to the Yahoo Sotos group because it is a very active group and I can relate to almost everything that is said on there. You may find this helpful too, as unfortunately, although this site used to be full of information, it is very quiet these days.
Susan UK
----- Original Message -----
From: VanessaSent: Thursday, November 16, 2006 9:05 PMSubject: [UndiagnosedOvergrowthSyndromes] Hello.Hi. I joined this group because my son Michael has an as of yet
undiagnosed overgrowth syndrome. The neurologist mentioned Sotos
syndrome and he has a lot of the symptoms. He is due to see the
geneticist in a month to find out for sure. Does anyone know how they
diagnose this? I have noticed that my son looks an awful lot like some
of the kids who have been diagnosed as being "Sotos-like". What
exactly does that mean? Could this possibly be a syndrome that hasn't
been discovered yet? If anyone could give me any advice, I would be
very grateful. I would like to go in to the geneticist's office with
as much information as possible. Thanks. :)
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