1. Sotos Syndrome Support Association Online community for education of professionals and families and to exchangeideas, gather research, and help one another cope. http://www.well.com/user/sssa/

Last updated: 12 July 2005 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.

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. Soto's Syndrome An article about soto's syndrome with an explanation of what it is, the features, symptoms and the prognosis. http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

4. What Is Sotos Syndrome? sotos syndrome, also known as cerebral gigantism because of the Children withsotos syndrome are often taller, heavier, and have larger heads than their 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.

5. 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" http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

6. Sotos Syndrome Support Group Of Canada The sotos syndrome Support Association of Canada / Association Canadienne d'Entraide du Syndr me de Sotos was formed to provide educational and http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

7. Sotos Syndrome / Family Village Library The sotos syndrome Support Association provides a social support environment for Possible Syndromes include, but are not limited to, sotos syndrome; 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.

8. Sotos sotos syndrome Infantile Giantism, http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

9. Tall Persons Club GB & Ireland · Medical Information · Sotos Syndrome The average child affected by sotos syndrome will have an IQ at the low end of One young lady I spoke to who has been affected by sotos syndrome told me 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.

10. Soto's Syndrome Information Page National Institute Of sotos syndrome Support Association 3 Danada Square East PMB 235 Wheaton, IL 60187 sssa@well.com http//www.well.com/user/sssa Tel 888 http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

11. SOTOS SYNDROME : Contact A Family - For Families With Disabled Children: Informa Contact a Family is a UK charity for families with disabled children. We offerinformation on specific conditions and rare disorders. http://www.cafamily.org.uk/Direct/s36.html

printer friendly SOTOS SYNDROME home how we can help medical information index of conditions ... how you can help 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. Prenatal diagnosis Macrocephaly, large hands, long arms and excessive growth are detectable using ultrasound scanning. Genetic counselling is available for affected families.

12. Tall Persons Club GB Ireland Medical Information Sotos Site Map. Member Login. sotos syndrome back to Medical Information Written by Phil Heinricy First published in 6ft+ magazine http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. Specific Disorders And Your Child's Behaviour Factsheet: Contact A Family - For SmithMagenis syndrome and sotos syndrome can cause severe sleep difficulties.Individuals with sotos syndrome are vulnerable to frequent severe tantrums. http://www.cafamily.org.uk/behaviour.html

printer friendly Contact a Family Factsheet: Specific disorders and your child's behaviour home how we can help medical information help for parents' groups ... how you can help Last updated June 2004 You can also download (0.3Mb) this factsheet in Adobe Acrobat pdf version 5 format or buy multiple copies from The Contact a Family Shop Introduction Having a child with a disability affects the whole family. Some conditions may affect the way a child behaves. Often many children with a particular disorder show similar patterns of behaviour as part of their condition. You may find it difficult to understand your child's behaviour and to be able to explain it to others. What is a behavioural phenotype? 'Behavioural phenotype' is a medical term which describes behaviour associated with specific disorders, particularly those which lead to learning disabilities. These disorders may result from a genetic or other biological cause e.g. an infection early in life. These behaviours may include: Common challenging behaviours Emotional and temperamental tendencies Learning disability Increased likelihood of psychiatric and psychological difficulties.

14. Sotos Syndrome sotos syndrome is a rare genetic disorder characterized by excessive growth that occurs prior to and after birth (prenatally and postnatally). At http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. SOTOS SYNDROME: A CASE REPORT:14(5) We document the first case report of sotos syndrome from Saudi Arabia.sotos syndrome (cerebral gigantism) is a rare form of accelerated growth in utero and 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.

16. SOTOS SYNDROME A CASE REPORT14(5) sotos syndrome A CASE REPORT. Mohammed Alhumaidi, MD http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. SOTOS SYNDROME Contact A Family - For Families With Disabled more about us using this site how you can help Did you find this page helpful? yes no sotos syndrome Cerebral Gigantism in Childhood http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. Ruvalcaba-Myhre-Smith Syndrome (www.whonamedit.com) A syndrome combining the principal elements of the sotos syndrome sotos syndromewith intestinal polyposis and pigmentary changes of the genitals. http://www.whonamedit.com/synd.cfm/1275.html

Home List categories Eponyms A-Z Biographies by country ... Contact Whonamedit.com does not give medical advice. This survey of medical eponyms and the persons behind them is meant as a general interest site only. No information found here must under any circumstances be used for medical purposes, diagnostically, therapeutically or otherwise. If you, or anybody close to you, is affected, or believe to be affected, by any condition mentioned here: see a doctor. A recommendation: Hypography is an open community about science and all things related Ruvalcaba-Myhre-Smith syndrome Also known as: Ruvalcaba’s syndrome II Associated persons: S. Myhre Rogelio H. A. Ruvalcaba David Weyhe Smith Description: A syndrome combining the principal elements of the Sotos syndrome (cerebral gigantism) with intestinal polyposis and pigmented lesions (café-au-lait spots) on the penis. There is severe mental deficiency, macrosomy, and macroencephaly. Reported also myopathy. Etiology unknown. Both sexes. From Birth. Autosomal dominant inheritance. D. Harris and William R. Smith, Oklahoma, in 1960 described a mother and four of her seven children with the triad of macrocephaly, pseudopapilledema, and multiple haemangiomas. G. A. Bannayan in 1971 described a single case with macrocephaly and multiple lipomas and haemangiomas. R. Ruvalcaba, S. Myhre, and David W. Smith, paediatricians, Seattle, in 1980 described two patients with macrocephaly, intestinal polyposis and spotted pigmentation of the shaft of penis.

19. Sotos Syndrome And Cutis Laxa Robertson And Bankier 36 (1) 51 sotos syndrome and cutis laxa Stephen P Robertson, Agnes Bankier http://tmsyn.an.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. Sotos Syndrome Survey Analysis; Walter Gilbert sotos syndrome is a rare genetic condition marked by rapid physical growth which Also unfortunately, while sotos syndrome is classified as a genetic 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.

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