Sotos syndrome

Sotos syndrome is also known as cerebral gigantism in childhood. It is a rare genetic condition affecting approximately 1 in 25,000 children.

Children with Sotos syndrome are generally significantly larger and heavier than average, caused by excessive growth before and after birth. Growth tends to slow at around the age of four and by adulthood people with Sotos syndrome are usually average size.

Children with Sotos syndrome typically have behaviour problems such as ADHD, phobias, obsessive and compulsive behaviour and tantrums. It is also common for children to have learning difficulties.

Typically, the developmental delay improves during school-age years and adults with Sotos syndrome are likely to be within the normal range for intellectual ability. Coordination does persist into adulthood.

Children with Sotos syndrome are likely to have special educational needs (SEN). As associated learning difficulties, behaviour difficulties and developmental delay can vary in severity, children with Sotos syndrome may be adequately supported through SEN additional support. It is however important to seek special educational needs advice as the delivery of therapies and support is crucial early on and the additional support of an Education, Health and Care Plan (EHCP) may be required.