1. NINDS Soto's Syndrome Information Page sotos syndrome Support Association 3 Danada Square East PMB 235 Wheaton, IL 60187sssa@well.com http//www.well.com/user/sssa Tel 888246-7772 630-682-8815. http://www.ninds.nih.gov/health_and_medical/disorders/sotos.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Soto's Syndrome Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Soto's Syndrome Information Page Synonym(s): Cerebral Gigantism Reviewed 07-01-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Soto's Syndrome? Is there any treatment? What is the prognosis? What research is being done? ... Organizations What is Soto's Syndrome? Soto's syndrome is a rare genetic disorder characterized by excessive physical growth during the first 2 to 3 years of life. The disorder may be accompanied by mild mental retardation, delayed motor, cognitive, and social development, hypotonia (low muscle tone), and speech impairments. Children with Soto's 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 disportionately large and long head with a slightly protrusive forehead, large hands and feet, hypertelorism (an abnormally increased distance between the eyes), and downslanting eyes. Clumsiness, an awkward gait, and unusual aggressiveness or irritability may also occur. Although most cases of Soto's syndrome occur sporadically, familial cases have also been reported.

2. Sotos Syndrome Support Group Of Canada Provides educational and emotional support, and current information. English and French. http://www.sssac.com

SSSAC/ACESS was incorporated January 2002 to provide educational and emotional support to Canadian families of persons with Sotos syndrome and to provide a better understanding to parents, government and the public at large of Sotos syndrome (Cerebral Gigantism) through education Sotos Syndrome Support Association of Canada 1944 Dumfries Montreal , Quebec, H3P 2R9 Charity/business tax number : #898824917RR001 info@sssac.com No Content From This Site May Be Reproduced or Publicly Reposted Without Express Written Permission From Sotos Syndrome Support Association of Canada Site Design Arriba Caribe Group

3. Sotos Syndrome sotos syndrome. sotos syndrome Support Association. Three Danda Square East, 235 Support Group for sotos syndrome, Australia. Child Growth Foundation http://www.kumc.edu/gec/support/sotos.html

Sotos Syndrome Sotos Syndrome Support Association Three Danda Square East, #235 Wheaton, IL 60187 Phone: (888) 246-SSSA or (708) 682-8815 e-mail: sssa@well.com Web site: http://www.well.com/user/sssa/ Support Group for Sotos Syndrome , Australia Child Growth Foundation 2 Mayfield Avenue Chiswick, London, United Kingdom Phone: +44 (0)181 994 7625 / 995 0257 E-mail: CGFLONDON@aol.com Sotos Association - L'Eveil 64 avenue G. Clémenceau 63800 Cournon D'Auvergne France Phone: 04-73-84-50-76 E-mail: sotoseveil@infonie.fr Eltern-Initiative Sotos-Syndrom (EISS), Germany, auf Deutsch Web site: http://www.sotossyndrom.de/ Also See: National organizations information on genetic conditions or birth defects Information for Siblings and Family Members Search AltaVista for "Sotos Syndrome" GeneClinics To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments Revised March 1, 2001 Genetic Societies Clinical Resources Labs Clinics ... Search Genetics Education Center Debra Collins, M.S. CGC

4. Sotos Syndrome / Family Village Library Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search Google for "sotos syndrome" Who to Contact. sotos syndrome Support Association (SSSA) 3 Danada Square E. PMB Suite 235. Wheaton, Illinois, 60187 The sotos syndrome Support Association provides a social support environment for professionals and families of http://www.familyvillage.wisc.edu/lib_soto.htm

Sotos Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Sotos Syndrome" Who to Contact Sotos Syndrome Support Association (SSSA) 3 Danada Square E. PMB Suite 235 Wheaton, Illinois, 60187 888-246-SSSA (toll-free) E-mail: sssa@well.com Web: http://www.well.com/~sssa/ The Sotos Syndrome Support Association provides a social support environment for professionals and families of individuals affected by the syndrome, so they can meet, exchange ideas and help one another cope. They provide an understanding of the condition through education. They publishes a quarterly newsletter, SSSA Newsletter , that offers opportunities for members to network, and share ideas. The newsletter also contains articles, and a current membership roster. The Sotos Syndrome Support Association has a bibliography of articles that are available to members and audio and video tapes of previous conferences that are available for purchase. They have a new 55-page booklet, "Sotos Syndrome," that contains a description of the syndrome from newborn to adulthood; medical and developmental evaluations; and a glossary of terms. The Association hosts annual conference. Where to Go to Chat with Others Soto Syndrome For the parents/grandparents raising children diagnosed with SOTOS SYNDROME. Come share your concerns/achievements with others in the same situation.

5. Tall Persons Club GB & Ireland · Medical Information · Sotos Syndrome sotos syndrome, back to Medical Information. The average child affectedby sotos syndrome will have an IQ at the low end of the normal range. http://www.tallclub.co.uk/medical/sotos.asp

Home Bulletin Board (BBS) Chat Room Events ... Member Login Sotos Syndrome back to Medical Information Sotos is one of the multitude of syndromes, in which height can be one of the symptoms. Its cause is thought to be genetic but, as the chromosome responsible has not been identified, there is no laboratory test to confirm the diagnosis. First described in 1964, the characteristics which lead toward a diagnosis include accelerated growth, facial characteristics, large hands and feet, poor co-ordination, and developmental delay. To date over 100 families are known to the Sotos Group in the UK, but it must be realised that many children are so mildly affected, that they remain undiagnosed, and live perfectly happy and normal lives. Some parents prefer not to inform schools and friends, in order for the child not to be "labelled", others will make the condition known, as it can help toward the provision of the proper support, such as physiotherapy, speech therapy, or attendance allowances. What follows is only the briefest outline of the symptoms which lead to a positive diagnosis. As always, it is important not to view each one in isolation, as they can occur singly, and independently of the syndrome, or as one of a number of symptoms, associated with a totally different condition.

6. Sotos Syndrome sotos syndrome. DESCRIPTION A genetic disorder causing physical overgrowth with delayed motor, cognitive, and social development. CAUSES Unknown. Synonyms cerebral gigantism. ICD9-CM 253.0 acromegaly and gigantism. Author(s) Mark R. http://www.5mcc.com/Assets/SUMMARY/TP1069.html

Sotos syndrome DESCRIPTION: A genetic disorder causing physical overgrowth with delayed motor, cognitive, and social development. CAUSES: Unknown Synonyms: cerebral gigantism ICD-9-CM: 253.0 acromegaly and gigantism Author(s): Mark R. Dambro, MD

7. NORD - National Organization For Rare Disorders, Inc. General Discussion. sotos syndrome is a rare genetic disorder characterized by excessive growth that Most cases of sotos syndrome occur randomly (sporadically), probably as a new http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Sotos Syndrom

8. Sotos Syndrome Survey Analysis; Walter Gilbert sotos syndrome is a rare genetic condition marked by rapid physical growth which begins before birth and extends thru See more information at sotos syndrome What is it? http://walter.gilbert.name/sotos

Sotos Syndrome Survey Analysis Walter Gilbert Background Sotos Syndrome is a rare genetic condition marked by rapid physical growth which begins before birth and extends thru the first years of life. It is also called cerebral gigantism because of the distinctive shape and size of the head. Unfortunately, this rapid physical development is usually accompanied by delayed motor, cognitive and social development. Muscle tone is low and speech is significantly impaired. See more information at: Sotos syndrome: What is it? Also unfortunately, while Sotos syndrome is classified as a genetic condition, there is no genetic test which can confirm a diagnosis. There is a very active, international community of parents of children who have been diagnosed as having classic Sotos or being Sotos-like . It is centered around an e-mail list; current and archived messages are available at http://groups.yahoo.com/group/Sotosyndrome/ Analyses Having belonged to the Sotos e-mail list for about a year, it became apparent to me that many of the affected children shared traits and symptoms as diverse as eye color, dental problems, and bowel movement abnormalities. Therefore, in November, 2000, I developed a 40-question survey which was e-mailed to the Sotos list. To date [May, 2001], I have received just over 60 responses. I have entered these into a large spreadsheet and have done some analysis which will be presented here. These web pages will likely change often as new responses are received and more analysis is conducted.

9. Health Information Resource Database: Sotos Syndrome Support Association The sotos syndrome Support Association (SSSA) was organized in 1988 to provide a support network for and individuals affected by the syndrome. sotos syndrome, also known as cerebral http://www.health.gov/nhic/NHICScripts/Entry.cfm?HRCode=HR2419

10. Sotos Syndrome Support Association The sotos syndrome Support Association is very proud to bring you our Website. SotosSyndrome and SSSA FAQ. Your link to the latest information. http://www.well.com/~sssa/

Last updated: 11 April 2004 These pages are designed for best viewing using screen resolution. We're very glad that you dropped by!!! Our Visit-O-Meter stands now at: (Since: 15 September 1995) Translate this page with InterTran (tm) Deutsch Français Español Portuguese Japanese (Shift JIS) Finnish Italiano Svensk Russian/Ðóññêèé (CP 1251) Nederlands Brasileiro Danske Íslenska Norsk Croatian/hrvatski (CP 1250) Hungarian/Magyar (CP 1250) Polish/polski (CP 1250) Czech/ceski (CP 1250) Bulgarian (CP 1251) Romanian Serbian/srpski (Latin) Slovenian/slovenski (CP 1250) Greek/Åëëçíéêüò Welsh/'n Cymraeg Please MOVE AND HOLD your MOUSE CURSOR over the little DOWN ARROWS in the translated web page in order to see a pop-up window with ALTERNATIVE TRANSLATIONS. The Sotos Syndrome Support Association is very proud to bring you our Website. It has been compiled from the contributions of members of this association. We hope that it adds value to your understanding of this syndrome and the people who are affected by it. Please drop us a note and let us know what you think.

11. Sotos Syndrome Support Association Online community for education of professionals and families and to exchange ideas, gather research, and help one another cope. Quarterly newsletters, reference library, annual meetings, and conferences are available to members and professionals. http://www.well.com/user/sssa/

Last updated: 11 April 2004 These pages are designed for best viewing using screen resolution. We're very glad that you dropped by!!! Our Visit-O-Meter stands now at: (Since: 15 September 1995) Translate this page with InterTran (tm) Deutsch Français Español Portuguese Japanese (Shift JIS) Finnish Italiano Svensk Russian/Ðóññêèé (CP 1251) Nederlands Brasileiro Danske Íslenska Norsk Croatian/hrvatski (CP 1250) Hungarian/Magyar (CP 1250) Polish/polski (CP 1250) Czech/ceski (CP 1250) Bulgarian (CP 1251) Romanian Serbian/srpski (Latin) Slovenian/slovenski (CP 1250) Greek/Åëëçíéêüò Welsh/'n Cymraeg Please MOVE AND HOLD your MOUSE CURSOR over the little DOWN ARROWS in the translated web page in order to see a pop-up window with ALTERNATIVE TRANSLATIONS. The Sotos Syndrome Support Association is very proud to bring you our Website. It has been compiled from the contributions of members of this association. We hope that it adds value to your understanding of this syndrome and the people who are affected by it. Please drop us a note and let us know what you think.

12. What Is Sotos Syndrome? What is sotos syndrome? Typical characteristics of sotos syndrome Growth.Rapid growth is common during the first five years of life. http://www.well.com/user/sssa/whatisit.htm

What is Sotos Syndrome? Translate this page with InterTran (tm) Deutsch Français Español Portuguese Japanese (Shift JIS) Finnish Italiano Svensk Russian/Ðóññêèé (CP 1251) Nederlands Brasileiro Danske Íslenska Norsk Croatian/hrvatski (CP 1250) Hungarian/Magyar (CP 1250) Polish/polski (CP 1250) Czech/ceski (CP 1250) Bulgarian (CP 1251) Romanian Serbian/srpski (Latin) Slovenian/slovenski (CP 1250) Greek/Åëëçíéêüò Welsh/'n Cymraeg Please MOVE AND HOLD your MOUSE CURSOR over the little DOWN ARROWS in the translated web page in order to see a pop-up window with ALTERNATIVE TRANSLATIONS. Excerpts from: "Sotos Syndrome: A Handbook for Families" by Rebecca Rae Anderson, M.S., J.D. Bruce A. Buehler, M.D. (This handbook is an exellent (really excellent!!!) resource for professionals and parents, alike. We encourage you to order copies not only for yourself, but also as an information source for your school, your library, your relatives, and even your doctor 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.

13. Sotos Syndrome Information Diseases Database sotos syndrome Cerebral gigantism, Disease Database Information http://www.diseasesdatabase.com/sieve/item1.asp?glngUserChoice=29134

14. SOTOS SYNDROME : Contact A Family - For Families With Disabled Children: Informa printer friendly, sotos syndrome, sotos syndrome Cerebral Gigantism inChildhood. In this rare syndrome babies are generally significantly http://www.cafamily.org.uk/Direct/s36.html

printer friendly SOTOS SYNDROME home more about us in your area conditions information ... how you can help search this site Did you find this page helpful? yes no Sotos syndrome: Cerebral Gigantism in Childhood In this rare syndrome babies are generally significantly larger and heavier than average caused by excessive prenatal and early post-natal growth. Characteristics include macrocephaly (large head) with accelerated bone maturation, delayed development and language problems, widely spaced eyes, prominent jaw, and high arched palate. Intelligence varies from normal to mild learning disability. Children may be clumsy or ataxic (unsteady). Growth rate usually slows at 4-5 years. Early adolescent development usually occurs. Adults are usually within normal height parameters. Weaver syndrome is a condition characterised by: accelerated growth; mild hypotonia ; loose skin; thin hair; and camptodactyly (permanent immobility of a flexed finger joint). Inheritance patterns Most cases are sporadic mutations. Once established inheritance is autosomal dominant. Weaver syndrome inheritance probably has some pattern of inheritance though this has not been fully determined.

15. Sotos Syndrome sotos syndrome is a rare genetic disorder characterized by excessive growth thatoccurs prior to and after birth (prenatally and postnatally). sotos syndrome. http://www.bchealthguide.org/kbase/nord/nord271.htm

document.write(''); var hwPrint=1; var hwDocHWID="nord271"; var hwDocTitle="Sotos Syndrome"; var hwRank="1"; var hwSectionHWID="nord271"; var hwSectionTitle=""; var hwSource="cn6.0"; var hwProdCfgSerNo="wsh_html_031_s"; var hwDocType="NORD"; National Organization for Rare Disorders, Inc. Sotos Syndrome Important It is possible that the main title of the report is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. Synonyms Cerebral Gigantism Disorder Subdivisions None Related Disorders List Information on the following diseases can be found in the Related Disorders section of this report: Weaver Syndrome Beckwith-Wiedemann Syndrome Simpson Dysmorphia Syndrome Marshall-Smith Syndrome Nevo Syndrome Fragile X Syndrome Marfan Syndrome Homocystinuria Triplo X Syndrome XYY Syndrome Klinefelter Syndrome Pituitary gigantism General Discussion Symptoms In most cases, infants with Sotos Syndrome have characteristic abnormalities of the head and face (craniofacial) area. Many affected infants have an abnormally large head (macrocephaly) that may appear elongated (dolichocephalic) with an unusually prominent forehead (frontal bossing). In about 50 percent of cases, macrocephaly may occur before birth (prenatally). The head may remain at an abnormally increased size throughout childhood and adulthood, although height and bone growth typically stabilize with advancing age. The characteristic facial abnormalities may include protrusion of the lower jaw bone (prognathism); a pointed chin; and/or a highly arched roof of the mouth (palate). Affected individuals may also experience early growth (eruption) of the teeth, sparse hair on the front portion of the head (frontoparietal balding) as well as receding hairline.

16. Sotos Syndrome Founded 1984. Provides information and mutual support for families of childrenwith sotos syndrome. sotos syndrome. sotos syndrome Support Association. http://www.bchealthguide.org/kbase/shc/shc29sot.htm

document.write(''); var hwPrint=1; var hwDocHWID="shc29sot"; var hwDocTitle="Sotos Syndrome"; var hwRank="1"; var hwSectionHWID="shc29sot"; var hwSectionTitle=""; var hwSource="cn6.0"; var hwProdCfgSerNo="wsh_html_031_s"; var hwDocType="SHC"; Self Help Clearinghouse Sotos Syndrome Sotos Syndrome Support Association International network. Founded 1984. Provides information and mutual support for families of children with Sotos syndrome. Newsletter, information and referrals, phone support, pen pals, annual conferences. WRITE: SSSA 3 Danada Square, E. PMB Suite 235 Wheaton, IL 60187 CALL: 402-556-2445 1-888-246-SSSA E-MAIL: sssa@well.com WEBSITE: http://www.well.com/user/sssa VERIFIED: 3/31/2003 The above information is based upon information available through the "verified" date at the end of each listing. Since American Self-Help Group Clearinghouse's resources are limited; it is not possible to keep every entry in the American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information. For additional information and assistance about self-help groups, please contact the American Self-Help Group Clearinghouse in Cedar Knolls, New Jersey, by email at: info@selfhelpgroups.org

17. SOTOS SYNDROME: A CASE REPORT:14(5) November 1994. sotos syndrome A CASE REPORT. Mohammed Alhumaidi, MD. Wedocument the first case report of sotos syndrome from Saudi Arabia. http://www.kfshrc.edu.sa/annals/146/cr9400.html

November 1994 SOTOS SYNDROME: A CASE REPORT Mohammed Alhumaidi, MD Address reprint requests and correspondence to Dr. Alhumaidi: Assistant Professor, College of Medicine, King Saud University, Abha Branch, P.O. Box 641, Abha, Saudi Arabia. Accepted for publication 2 May 1994. A four-year-old Saudi male was seen in the Endocrine Clinic of Asir Central Hospital because of a voracious appetite and excessive gain in weight. On examination, he had the typical phenotypic features of Sotos syndrome which included accelerated growth with height and weight more than three standard deviations (SD) above the mean. He had coarse facial features, prominent forehead, macrocephaly, large ears, hypertelorism and aplethoric face. He was frequently aggressive with advanced bone age of five years and magnetic resonance imaging (MRI) of the brain indicated widening of the lateral ventricles. He had no features to suggest other forms of overgrowth such as Marfan syndrome, McCune-Albright syndrome or homocystinuria. Endocrine causes of excessive weight gain due to pituitary or adrenal hyperfunction have been ruled out by biochemical tests, computed tomography (CT), and MRI. We document the first case report of Sotos syndrome from Saudi Arabia.

18. Congenital, Hereditary, And Neonatal Diseases And Abnormalities Abnormalities Aicardi Syndrome (not on MeSH) sotos syndrome Home Page - SSSA (US) sotos syndrome A Case Report http://www.mic.ki.se/Diseases/c16.html

search search staff sitemap ABOUT KAROLINSKA INSTITUTET ... print this page Diseases and Disorders Links pertaining to Congenital, Hereditary, and Neonatal Diseases and Abnormalities Alert! Patients and laypersons looking for guidance among the target sources of this collection of links are strongly advised to review the information retrieved with their professional health care provider. Start Page Contents: Abnormalities Aicardi Syndrome (not on MeSH) Amniotic Band Syndrome Anencephaly ... Wolf-Hirschhorn Syndrome (not on MeSH) Congenital, Hereditary, and Neonatal Diseases and Abnormalities The US National Organization for Rare Disorders , including a Rare Disease Database , and a List of Disease-specific Organizations Search Jablonski's MCA/MR Syndromes Database [Congenital Abnormalities associated with Mental Retardation] - NLM (US) Indice delle malattie [in Italian] - InformaGene (IT) A Short History of Mapping [P Murphy] GENATLAS: Pathology Search [J Frezal] - Univ Rene Descartes, Paris (FR) OrphaNet [rare diseases] - (FR) A Birth Disorder Information Directory - Spamgid.com

19. Sotos Syndrome Survey Analysis; Walter Gilbert sotos syndrome Survey Analysis. © Walter Gilbert 2001. Background.Sotos See more information at sotos syndrome What is it? Also http://www.otal.umd.edu/~walt/sotos/

Sotos Syndrome Survey Analysis Walter Gilbert Background Sotos Syndrome is a rare genetic condition marked by rapid physical growth which begins before birth and extends thru the first years of life. It is also called cerebral gigantism because of the distinctive shape and size of the head. Unfortunately, this rapid physical development is usually accompanied by delayed motor, cognitive and social development. Muscle tone is low and speech is significantly impaired. See more information at: Sotos syndrome: What is it? Also unfortunately, while Sotos syndrome is classified as a genetic condition, there is no genetic test which can confirm a diagnosis. There is a very active, international community of parents of children who have been diagnosed as having classic Sotos or being Sotos-like . It is centered around an e-mail list; current and archived messages are available at http://groups.yahoo.com/group/Sotosyndrome/ Analyses Having belonged to the Sotos e-mail list for about a year, it became apparent to me that many of the affected children shared traits and symptoms as diverse as eye color, dental problems, and bowel movement abnormalities. Therefore, in November, 2000, I developed a 40-question survey which was e-mailed to the Sotos list. To date [May, 2001], I have received just over 60 responses. I have entered these into a large spreadsheet and have done some analysis which will be presented here. These web pages will likely change often as new responses are received and more analysis is conducted.

20. Sotos Syndrome Survey Analysis; Heights Of Sotos Children; Walter Gilbert Note For simplicity and clarity of writing, I will refer to the children(and the few adults) diagnosed with sotos syndrome as Sotos children. http://www.otal.umd.edu/~walt/sotos/sotos_growth_charts.htm

Height of Sotos Children Walter Gilbert Return to the main page. Note: For simplicity and clarity of writing, I will refer to the children (and the few adults) diagnosed with Sotos syndrome as Sotos children Comparing the heights of Sotos children with national norms is difficult given that responses to the survey come from all over the world. Therefore, the charts, below, reflect only children born in the United States and assumed (from eye and hair color) to be caucasian. Hopefully, this restricted sample will be representative of all Sotos children. In the following charts, each red dot represents the [current] age and height of a Sotos child from the survey. The green line represents the U.S. average height vs. age (the 50th percentile), the blue line represents the 75th percentile, and the black line the 95 percentile. That is, the height of 95% of U.S. caucasian children will be at or below this black line for a given age. It is easy to see that almost all of the the Sotos children are above the 95th percentile line; often well above it. However, as seems to be characteristic of Sotos syndrome, nothing is consistent: there are several children of average height for their age. Height data taken from the Third National Health and Nutrition Examination Survey , (NHANES III), 1988-94, conducted by the National Center for Health Statistics (NCHS) of the Centers for Disease Control and Prevention (CDC).

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