The Child Growth Foundation
Sotos Syndrome
Sotos Syndrome Support Network
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TALL STATURE

Children with tall stature, i.e. above the 99.6th centile, are usually so because of genetic reasons - they simply have tall parents! This is referred to as constitutional tall stature. However, tall stature may also be associated with various paediatric syndromes that require specialist assessment. Two of these conditions are Marfan syndrome and Sotos syndrome.

Constitutional tall stature

Tall stature in childhood usually presents less initial concern than short stature because, at least in early childhood, being tall can be advantageous. However, excessive tall stature can cause problems, particularly at school. It may be difficult to remember that a five-year old child who has the stature of an eight-year-old only has the educational and emotional development of a five-year old. Their size can seem inappropriate for their classroom peers and so very tall children may be labelled as clumsy or aggressive.

Other treatments that reduce growth hormone secretion are being evaluated through clinical trials. As a final option, a surgical reduction of leg length is a possibility.

If extreme tall stature is associated with psychological or behavioural difficulties then treatment can be offered. The older treatment option of sex steroids (oestrogen in girls and testosterone in boys) is not as effective as previously believed in slowing growth and there may be side effects. Theoretically, sex steroids rapidly fuse the growing ends of the bones and so stop growth prematurely. However, they also induce a growth spurt so on balance the outcome may be disappointing.

Diagnosis: From around 2-4 years of age. Tall stature and dysmorphic features

Sotos syndrome, or gigantism, usually presents in early childhood. The physical characteristics are tall stature, large hands and feet and poor circulation. There may also be special educational needs. Bone age is often advanced and puberty usually occurs early so excessive tall stature may not be a feature of adulthood.

Typical growth chart for Sotos Syndrome.

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