NINDS Sotos Syndrome Information Page
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Is there any treatment?
What is the prognosis?
What research is being done?
Clinical Trials
Organizations
What is Sotos Syndrome?
Sotos syndrome is a rare genetic disorder characterized by excessive physical growth during the first few years of life. Children with Sotos syndrome tend to be large at birth and are often taller, heavier, and have larger heads (macrocrania) than is normal for their age. Symptoms of the disorder, which vary among individuals, include a disproportionately large and long head with a slightly protrusive forehead, large hands and feet, hypertelorism (an abnormally increased distance between the eyes), and down-slanting eyes. The disorder is often accompanied by mild mental retardation; delayed motor, cognitive, and social development; hypotonia (low muscle tone), and speech impairments. Clumsiness, an awkward gait, and unusual aggressiveness or irritability may also occur. Although most cases of Sotos syndrome occur sporadically (meaning they are not inherited), familial cases have also been reported.
Is there any treatment?
There is no standard course of treatment for Sotos syndrome. Treatment is symptomatic.
What is the prognosis?
Sotos syndrome is not a life-threatening disorder and patients may have a normal life expectancy. The initial abnormalities
of Sotos syndrome usually resolve as the growth rate becomes normal after the first few years of life. Developmental delays
may improve in the school-age years, and adults with Sotos syndrome are likely to be within the normal range for intellect
and height. However, coordination problems may persist into adulthood.
What research is being done?
The NINDS supports and conducts a wide range of studies which focus on identifying and learning more about the genes involved
in normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding
how this process can go awry and, thus, may eventually give clues to understanding disorders such as Sotos syndrome.
NIH Patient Recruitment for Sotos Syndrome Clinical Trials
| Sotos Syndrome Support Association P.O. Box 4626 Wheaton, IL 60189 sssa@well.com http://www.well.com/user/sssa Tel: 888-246-7772 |
The Arc of the United States 1010 Wayne Avenue Suite 650 Silver Spring, MD 20910 Info@thearc.org http://www.thearc.org Tel: 301-565-3842 Fax: 301-565-3843 or -5342 |
| March of Dimes Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 askus@marchofdimes.com http://www.marchofdimes.com Tel: 914-428-7100 888-MODIMES (663-4637) Fax: 914-428-8203 |
National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
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National Institute of Neurological Disorders and Stroke
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Last updated September 16, 2008
National Institute of Neurological Disorders and Stroke
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