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 90^th percentile, bone age above the 90^th 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 J 

(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.