Hi Wahine
Welcome to the group. My daughter Shannon is 9 and her diagnosis is
Unrecognised Overgrowth Syndrome. This means that although she has
just about every feature of Sotos, she tested negatively. She has
all the facial signs as well but does not have the overall "sotos
look". There are quite a few children in this position. Some come
under the title of Sotos-like. It is not yet known whether Sotos-
like is an extension of Sotos, a condition completely in its own
right, or a general description of vaious overgrowth conditions put
together under one umbrella. A lot of research is currently taking
place.

As to drooling, well Shannon could have won the world gold medal when
she was younger !! It was just as if a tap had been slowly turned on
in her mouth, the saliva just flowed out. She was always in bibs, a
clean one at least every hour (by which time the saliva was dripping
off the end) and still her clothes underneath were soaked. It
started to get better when she was about 6, although she still often
has a damp mouth and will drool when very tired or unwell.

The professional you need to see for a diagnosis is a geneticist,
because they are the ones who can carry out the necessary tests for
Sotos or any other syndrome. I would just like to say that whilst
children with Sotos cross a very wide range of abilities, your son's
development does seem quite advanced for most children with
Sotos/Overgrowth Syndromes.

There is a very active website which you might be interested in, for
anyone with overgrowth conditions -
www.health.group.yahoo.com/group.sotosyndrome (only one S in the
middle)

I hope this helps.

Susan UK