At the initial clinic appointment, we recommend that the history and examination should aim to identify known associations of Sotos syndrome (as outlined under Clinical characteristics). In particular an echocardiogram is indicated because of the association with congenital heart disease.

Subsequent to this initial assessment, children with Sotos syndrome should be reviewed on annual basis with the aim of identifying any evolving Sotos syndrome complications. The review should therefore include a thorough history and examination with particular assessment of the back for kyphoscoliosis.

Tumour screening is not currently recommended for Sotos syndrome as the absolute risk of tumour development is low.