Thank you for responding so quickly!! 

That clears up a lot actually.  I believe that's what my son may have.  I don't believe he has classic Sotos either, as his head is more large diameter-wise than tall (it's 3 cm larger at 18 months old than his 38-year-old father's head!!), he's above the 100th percentile in height, weight, and HC, and he had a normal brain scan.  He is behind in walking and talking and is very unsteady and has the downsloping eyes and cute little button nose as well.  I posted his picture up and he does have a lot of the same characteristics as your son and the rest of the Sotos-like kids' pics I have seen here and at the other Sotos groups.  I'm so glad groups like this exist.  It makes this scary time a lot easier.  Thanks again. 

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "Pam" <pamlepro@...> wrote:
>
> Hello!
>
>
>
> There are group of individuals who have many of the characteristics of
> Sotos, but may be missing some of the main criteria used in diagnosing
> Sotos, my son is one of them. He has many traits of Sotos, but does not
> have the classic facial appearance (tall narrow skull). He has many other
> characteristics such as birth length 23 inches, no speech till age 4, fine
> motor & coordination issues (getting better now) his head is 98 percentile
> and always has been (it was 1 inch smaller than mine at age 5), large hands,
> feet, knees, his bone age was over 2 years advanced, down slanted eyes.I
> could go on and on. I snipped a section from the Sotos handbook for you to
> read.written by experts on Sotos Syndrome. Also, Sotos like kids tend to be
> chunkier with more rounded faces from what I am told. My son did not really
> have a prominent or pointed chin until he lost the baby chub on his face at
> about age 4 or so.
>
>
>
> "The strict criteria proposed for a diagnosis of Sotos syndrome requires at
> least three of the following: facial appearance consistent with the
> original reports; birth length above the 90th percentile, bone age above the
> 90th percentile; and early verbal and motor delays. Many children have
> large heads, low tone and developmental delay, without the classic
> constellation which can be confidently called Sotos syndrome. Children who
> lack a number of these features are more properly classified as showing
> "Sotos-like" characteristics. Specialists do not yet know whether these
> children are part of the spectrum of Sotos syndrome, or whether they
> represent variants or distinct conditions. For practical purposes, the
> medical, emotional, educational and behavioral needs are very similar.
> Maintaining a distinction will help researches define these conditions more
> accurately and will prevent mistaken assumptions with regard to particular
> children. On the whole, our experience is that children with Sotos-like
> patterns may resolve their early tone and speech problems more completely
> than children with Classic Sotos syndrome."
>
>
>
> My son had 3 of the main criteria (birth length, bone age, early verbal
> delays), but did not have the exact facial appearance and his gross motor
> skills were not considered delayed.but after about 18 months you could see
> he was falling behind peers his age with coordination. Dr. Schaefer (USA
> expert on Sotos) diagnosed him with our geneticist as "Sotos-like" after
> reviewing his medical/developmental history and pictures.
>
>
>
> Hope this clarified it for you a bit?
>
>
>
> It could be an as of yet unrecognized overgrowth syndrome too.
> Unfortunately this group is not very active. You might get more responses
> if you go the Sotos Yahoo group and ask there. There are people on that
> group who have kids with Classic Sotos, Sotos-like, Weavers, BWS and other
> syndromes. The group is for "overgrowth syndromes" not just Sotos anymore.
> There is a genetic test for Sotos, but it is NOT 100% accurate. A diagnosis
> can be made by clinical observation as well.looking at medical &
> developmental histories and your child's pictures at various ages and of
> course seeing your child in person. Our son was diagnosed without the
> genetic test.it did not exist when he was diagnosed.
>
>
>
> Take care!
>
> Pam :-)
>
> (Mom to Kevin age 7 Sotos-like)
>
>
>
> -----Original Message-----
> From: UndiagnosedOvergrowthSyndromes@yahoogroups.com
> [mailto:UndiagnosedOvergrowthSyndromes@yahoogroups.com] On Behalf Of Vanessa
> Sent: Thursday, November 16, 2006 4:05 PM
> To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
> Subject: [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. :)
>