Can anyone give me information on Sotos syndrome?

Question

My nephew has just been diagnosed with Sotos syndrome and it has upset the whole family. We need as much information as possible please and any usefull websites to visit.

Answer 1

Sotos Syndrome, also known as cerebral gigantism because of the distinctive head shape and size, is a genetic condition causing physical overgrowth during the first years of life. Ironically, this rapid physical development is often accompanied by delayed motor, cognitive and social development. Muscle tone is low, and speech is markedly impaired.

Children with Sotos Syndrome are often taller, heavier, and have larger heads than their peers. A child who looks older and acts younger than his/her peer group is at risk for poor self-esteem, strained peer and family relationships, and problems in school. Fortunately, in late childhood the gap begins to close. Muscle tone improves steadily and with it comes better speech. For many individuals, Sotos Syndrome simply alters developmental timing; despite early trends, the adult with Sotos Syndrome is likely to be within the normal range of height and intellect.

Many genetic conditions are obvious at birth, and a clear-cut diagnosis can be made with specialized laboratory tests. Sotos Syndrome is not among them. Rather, the diagnosis of Sotos Syndrome is frequently made months or even years following the birth of a child, after a slow process of wondering whether anything is amiss, listening to vague reassurances or equally vague gloomy projections, cherishing every sign of "normality," and secretly fearing something devastating is about to happen.

Answer 2

The link below is the link to the page that came up when googled Soto's syndrome. Hopefully you can use it to find everything.

Answer 3

http://www.healthline.com/galecontent/sotos-syndrome

Answer 4

Web MD is a wonderful site, very easy to navigate and has tons of good info. Good luck!

Answer 5

check out: