General Information

Sotos syndrome is a genetic condition that causes physical overgrowth and developmental delays during the first years of life. Children with Sotos syndrome are often taller, heavier and have larger heads than their peers. Sotos syndrome is sometimes called cerebral gigantism because of the distinctive head shape and size. Typically, children with Sotos syndrome also have delayed motor, cognitive and social development as well as low muscle tone and marked speech impairment. As the child matures, many of these gaps narrow: the rate of growth slows down, muscle tone improves and with it speech and other motor skills improve.

The name ‘Sotos’ syndrome came from the name of Dr. Juan Sotos – an American endocrinologist who in 1964 identified a number of patients who had unusually rapid growth, an advanced bone age, large heads, “coarse” facial features, and a developmental delay. Extensive evaluations of these individuals failed to reveal a consistent hormonal abnormality and Dr. Sotos subsequently suggested that the growth pattern was genetic – hence the term “Sotos syndrome”