Sotos Syndrome Survey Analysis

© Walter Gilbert 2001


Background

Sotos Syndrome is a rare genetic condition marked by rapid physical growth which begins before birth and extends thru the first years of life. It is also called cerebral gigantism because of the distinctive shape and size of the head. Unfortunately, this rapid physical development is usually accompanied by delayed motor, cognitive and social development. Muscle tone is low and speech is significantly impaired. See more information at:

Sotos syndrome: What is it?
Also unfortunately, while Sotos syndrome is classified as a genetic condition, there is no genetic test which can confirm a diagnosis.

There is a very active, international community of parents of children who have been diagnosed as having classic Sotos or being Sotos-like. It is centered around an e-mail list; current and archived messages are available at

http://groups.yahoo.com/group/Sotosyndrome/.

Analyses

Having belonged to the Sotos e-mail list for about a year, it became apparent to me that many of the affected children shared traits and symptoms as diverse as eye color, dental problems, and bowel movement abnormalities. Therefore, in November, 2000, I developed a 40-question survey which was e-mailed to the Sotos list. To date [May, 2001], I have received just over 60 responses. I have entered these into a large spreadsheet and have done some analysis which will be presented here.

These web pages will likely change often as new responses are received and more analysis is conducted.

Some interesting and sometimes unexpected results of the data include:

The following are links to other web pages containing various analyses.

  1. The heights of Sotos children.
  2. Analysis of many items
  3. Ages of parents at conception
  4. Potty training and bed wetting
  5. Details of hair and eye color.

The Sotos Syndrome Support Association home page is at:

http://www.well.com/user/sssa/.