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21. Ryliespage
genetics * The environment mother s diet before and after conception * No oneseems of 1 in 1000 in USA are born with spina bifida. WHAT IS hydrocephalus?
http://www.geocities.com/tanlen2/ryliespage.html
R Y L I E S P A G E A B O U T SPINA BIFIDA WHAT IS SPINA BIFIDA? Spina Bifida is the incomplete formation of the spine and spinal cord. It occurs 28 days after conception, before most even know they are pregnant! WHAT CAUSES SPINA BIFIDA? * Genetics
* The environment - mother's diet before and after conception
* No one seems to really know for sure
HOW COMMON IS SB? An average of 1 in 750 in Canada are born with Spina Bifida.
An average of 1 in 1000 in USA are born with Spina Bifida.
WHAT IS HYDROCEPHALUS? Hydrocephalus is an increased collection of cerebrospinal fluid in the brain due to blockage. The collection causes the ventricles in the brain to enlarge, which applies pressure to the brain tissue. If left untreated, the pressure on the brain tissue causes the skull to enlarge. HOW IS HYDROCEPHALUS TREATED? Hyrocephalus is usually corrected with a shunt to redirect the fluid. In Rylie's case the ventriculoperitoneal (VP) shunt drains the fluid to the abdomen where it is reabsorbed.
The shunt will likely stay in place throughout life. If the shunt malfunctions, the shunt will be surgically revised or replaced.
WHAT IS CHIARI II MALFORMATION?

22. USA Today-Health Library
genetics also seems to play a role. Questions To Ask Your Doctor Whichform of spina bifida is involved? Is hydrocephalus present?
http://www.healthscout.com/ency/68/596/main.html
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Definition
Spina Bifida is a developmental anomaly characterized by defective closure of the bony encasement of the spinal cord through which the spinal cord and meninges may or may not protrude. If the anomaly is not visible, the condition is called spina bifida occulta. If there is an external protrusion of the saclike structure, the condition is called spina bifida cystica, and is further classified according to extent of neural involvement (e.g., meningocele, meningomyelocele, or myelomeningocele). Description
Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the U.S. More children are affected by this condition than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined. Spina bifida is a disabling birth defect of the spinal column resulting from the failure of the spinal column to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back. The condition may cause varying degrees of paralysis and loss of feeling in the lower limbs, and bowel and bladder complications.

23. Resources
spina bifida How it starts. Types of spina bifida. genetics and folic acid. hydrocephalus.Shunt diagram. Level of lesion and walking. spinal cord tethering.
http://www.spinabifida.org/resources.htm
Resources
Books Spina Bifida Answering Your Questions about Spina Bifida by Children’s National Medical Center, Washington DC Children with Spina Bifida: A Parent’s Guide by Marlene Lutkenhoff Living with Spina Bifida: Shared Experiences by Cumberland College Living with Spina Bifida: A Guide for Families and Professionals by Adrian Sandler Spinabilities: A Young Person’s Guide to Spina Bifida by Marlene Lutkenhoff Hydrocephalus Hydrocephalus: Patient Information Booklet by Medtronic PS Medical Schooling Developing Inclusive School Communities: strategies for parents by Fae Kennish One of the Kids: Educating Children with and without disabilities together, in the same classes and schools A guide for parents by Wendy Stroeve Children with Spina Bifida and/or Hydrocephalus at School by ASBAH UK Self-esteem and skills The Straight Talk Manual: A Self-Esteem and Life Skills Workbook for Young People by Diane Brokenshire Life Skills Activities for Secondary Students with Special Needs by Darlene Mannix Social Skills Activities for Secondary Students with Special Needs by Darlene Mannix Arnold Chiari Malformation The Chiari Malformation: An Informational Pamphlet for Parents by Jacqueline Frost Parenting After the Tears: Parents Talk About Raising a Child with a Disability by Robin Simons Baby and Child by Penelope Leach Children’s Storybooks My Friend Andrew by Grace Moulton Marty and his Red Wheelchair by Marty van der Kley For adults Spina Bifida and Pregnancy by ASBAH

24. Spina Bifida
bifida. genetics also seems to play a role. People benefit. Questions. Whichform of spina bifida is involved? Is hydrocephalus present? Is
http://ww3.komotv.com/global/story.asp?s=1230739

25. Jays Pitcher's Family Rally Back From Spina Bifida
There s no single cause of spina bifida but nutrition, genetics and environmentall play a role. Facts about spina bifidahydrocephalus What are they?
http://www.canoe.ca/Health9905/31_spinabifida.html
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Monday, May 31, 1999 Jays pitcher's family rally back from spina bifida By MARLENE HABIB The Canadian Press Canada Health Profile
  • Health Expectancy
  • Life expectancy
  • Health Expenditures
  • Exercise frequency ...
  • Health Chat TORONTO (CP) As a pitcher, Bill Risley of the Toronto Blue Jays has keen balance. Risley's young son Kaleb, on the other hand, has trouble with balance even with splints. Kaleb has spina bifida , a neural-tube defect that will affect about one in 750 children born in Canada this year. Risley and his wife Brenda consider themselves lucky even though they were thrown yet another medical curve. Risley has a history of back problems. A few years ago, their daughter Sage scalded her throat when she put her mouth over a steaming pot of tea. The relief pitcher said an ultrasound on his pregnant wife revealed Kaleb's spine wasn't forming properly. But the early diagnosis gave the couple time to prepare for the challenges ahead.
  • 26. Birth Defects, Lungs, Respiratory, Pulmonary Resources On The Nursefriendly
    A new and important member of the genetics team was introduced in 1971 when the firstclass of master s spina bifida and hydrocephalus Association of Canada
    http://www.nursefriendly.com/nursing/directpatientcare/respiratory/links/birthde
    Lungs, Respiratory, Pulmonary Resources
    Birth Defects This page is sponsored in part, by: Comfeeze :"Cushioned protection for oxygen tubing by RoMedLLC."
    http://www.nursefriendly.com/comfeeze/
    Alpha 1 Association - Home...
    Our mission is to identify those affected by alpha-1-antitrypsin deficiency and to improve the quality of their lives through support, education, advocacy and research. Alpha-1 is a genetic, inherit...
    http://www.alpha1.org
    Alpha One Foundation...
    The Alpha One Foundation is a not-for-profit Florida corporation founded in early 1995 to advance the means to control and cure A1AD and to improve the quality of life for those with the disorder....
    http://www.alphaone.org
    Birth Defects Research for Children...
    The Association of Birth Defect Children (ABDC) is a non-profit organization that provides information and support for all kinds of birth defects....
    http://www.birthdefects.org
    Communicating Partners Center: James MacDonald's Web Page on Autism andLanu...

    http://www.jamesdmacdonald.com
    Congenital Heart Disease Information and Resources...
    Interactive forums, resources, and internet links for families, adults with CHD, nurses, and other health care professionals with an interest in pediatric cardiology....
    http://www.tchin.org

    27. Spina Bifida In Children And Infants, Le Bonheur Children's, Memphis, Tennessee
    hydrocephalus, sometimes referred to as water staff who treat spina bifida patients,including neurosurgery, urology, orthopedics, genetics, radiology, social
    http://www.lebonheur.org/spina_bifida.htm
    Spina Bifida Clinic
    Spina Bifida in Children and Infants
    Our Spina Bifida Clinic offers interdisciplinary, ongoing care for spina bifida in infants and children , spinal cord defects, childhood hydrocephalus and neural tube defects in children. What is Spina Bifida?
    The word spina bifida means split spine or it can refer to the vertebrae or bones of the spinal cord that do not close as they normally should. Children and infants born with spina bifida cystica may require pediatric neurosurgery, usually within the first 24 to 48 hours of life, to close the opening in their backs. Are There Different Diagnoses for Childhood Spina Bifida
    Generally, people use the terms "spina bifida" and "myelomeningocele" interchangeably, but here are three different Spina Bifida diagnoses:
    • Myelomeningocele and spina bifida cystica, or aperta, are the most severe forms of spina bifida, in which a portion of the spinal cord protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed.

    28. Spina Bifida
    the American College of Medical genetics (ACMG) and have other problems related tospina bifida that include hydrocephalus (increased fluid and pressure in the
    http://www.chw.org/display/PPF/DocID/5838/router.asp
    Brain Tumors Anencephaly Chiari Malformation Craniosynostosis ... Diagnoses : Spina Bifida E-mail this page Print this page
    Spina Bifida
    What is spina bifida? Spina bifida, also called myelodysplasia, is a condition in which there is abnormal development of the back bones, spinal cord, surrounding nerves, and the fluid-filled sac that surrounds the spinal cord. This neurological condition can cause a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body. The defect can occur anywhere along the spine.
    What are the types of spina bifida? The types of spina bifida include the following:
    • Spina bifida occulta - a mild form of spina bifida in which the spinal cord and the surrounding structures remain inside the baby, but the back bones in the lower back area fail to form normally. There may be a hairy patch, dimple, or birthmark over the area of the defect. Other times, there may be no abnormalities in the area. Meningocele - a moderate form of spina bifida in which a fluid-filled sac is visible outside of the back area. The sac does not contain the spinal cord or nerves. Myelomeningocele - a severe form of spina bifida in which the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common. A majority of babies with myelomeningocele will also have hydrocephalus, a condition that causes the fluid inside of the head to build up, causing pressure inside of the head to increase and the skull bones to expand to a larger than normal size.

    29. Latex Allergy Links - Spina Bifida
    Latex Concerns spina bifida Clinic Oakland genetics Kaiser Permanente; AllergiesQuestions and Answers PDF spina bifida and hydrocephalus Association of
    http://www.latexallergylinks.org/sb.html
    Your gateway to latex allergy information on the Internet
    Spina Bifida

    30. HSC: Unlocking The Mysteries Of Spina Bifida (Kaleidoscope)
    Daune MacGregor (Neurology), and Stephen Scherer (genetics and Genomic with the mostsevere form of spina bifida develop hydrocephalus, accumulation of
    http://www.sickkids.on.ca/kaleid/SUM98/spina.asp
    Go back to Summer 1998 Unlocking the mysteries of spina bifida To Maureen Dennis, psychologist and researcher at Sick Kids, the definition of heroine is a mother who raises a child with spina bifida, the number one disabling birth defect in North America. "There's something totally heroic about the way mothers care for these children," says the psychologist who has devoted much of her career to studying this and other neuro-developmental disorders. Spina bifida is a neural tube defect that occurs within the first four weeks of pregnancy. The vertebrae and/or spinal cord of the fetus fail to develop properly, resulting in varying degrees of damage to the spinal cord and brain. In Canada, approximately one in every 750 infants is born with spina bifida, a rate of frequency that should have commanded a lot of attention in the research community. It has not - until now. In March, Dr. Dennis and colleagues from Sick Kids, together with Jack Fletcher and his colleagues from the University of Texas-Houston Health Science Center, embarked on a five-year, multi-million-dollar study to uncover the secrets of spina bifida. The two institutions will evaluate 583 children with spina bifida and 159 normally developing children in five concurrent projects.

    31. TheFetus.net - Spina Bifida -Luís F. Gonçalves, MD - Maria Verônica Muñoz Ro
    The presence of severe hydrocephalus is considered a majority of the cases of spinabifida are compatible prior to conception (Committee on genetics, 1999) 5
    http://www.thefetus.net/page.php?id=135

    32. Genetics Program For Nursing Faculty Genetic Conditions, Cincinnati Children's H
    spina bifida / Syrinx / hydrocephalus Home Page at MGH / Harvard; The NationalAlliance for Clinical genetics Photographs. Feel free to contact us at
    http://www.cincinnatichildrens.org/ed/clinical/gpnf/resources/links/conditions.h
    Home Contact Us Site Map Go to Advanced Search ... National / Goverment Genetic Conditions Educational Biological / Fetal Development GPNF Curriculum Resources GPNF Curriculum ... Continuing Education Options
    GPNF Genetic Links
    Genetic Conditions Resources
    The Genetics Program for Nursing Faculty at Cincinnati Children's Hospital Medical Center recommends the following resources about genetic conditions.
    Feel free to contact us at: Jo Ann Monday, Program Coordinator
    Phone: 513-636-0123
    Toll-free: 800-344-2462 extension 60123
    Fax: 513-636-0124
    Email: gepn@cchmc.org
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    3333 Burnet Avenue, Cincinnati, Ohio 45229-3039
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    Serving infants to adolescents, Cincinnati Children's Hospital Medical Center is an
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    Send this page to a friend Send ecards to patients or friends. Printer-friendly Corporate Information ... Community Education and Events divsLoaded=1;

    33. Liens En Déficience Intellectuelle
    Translate this page Hydrocéphalie et spina bifida (hydrocephalus and spina bifida) Lissencephalie (lissencephaly sitesintéressants Génétique (genetics) Autisme (autism).
    http://www.er.uqam.ca/nobel/d341460/liens.htm
    (li nks to websites on genetic syndromes and other medical conditions that may cause mental retardation Syndrome de Allan / Syndrome de Allan-Herndon (Allan Herndon syndrome)
    Argininémie
    (Argininamia)
    Galactosémie
    Galactosemia
    Hydrocéphalie et Spina Bifida
    hydrocephalus and Spina Bifida
    Lissencephalie
    (lissencephaly)
    Neurofibromatose
    neurofibromatosis
    Paralysie Cérébrale
    Cerebral palsy
    Phénylcétonurie
    phenylketonuria
    Sclérose tubéreuse de Bourneville
    tuberous sclerosis
    Trisomies 13, 18 et 21
    trisomy 13, 18, 21
    Syndrome du bébé secoué
    (Shaken baby syndrome) Syndrome Alcolo-foetal Foetal alcohol syndrome Syndrome d'Angelman Angelman syndrome ... Syndrome "Cat-Eye" (Cat-eye syndrome) Syndrome Cornelia De Lange (Cornelia de Lange syndrome) Syndrome du Cri du Chat (Cri du chat syndrome) Syndrome de Klinefelter (Klinefelter syndrome) Syndrome Landau-Kleffner (Landau-Kleffner syndrome) Syndrome Langer-Giedion (Langer-Giedion syndrome) Syndrome de Prader-Willi (Prader-Willi Syndrome) Syndrome Smith-Magenis (Smith-Magenis syndrome) ... Syndrome Sturge-Weber (Sturge-Weber syndrome) Syndrome de Turner (Turner syndrome) Syndrome Triplo-X (Triplo-X syndrome) Syndrome de Rett (Rett syndrome) Syndrome Vélocardiofacial /Syndrome de DiGeorge (velocardiofacial syndrome) Syndrome de Williams (Williams syndrome) Syndrome du X-fragile (Fragile X syndrome) ... Génétique (Genetics) Autisme (autism) Syndrome d'Allan-Herndon (Allan-Herndon syndrome)

    34. Spina Bifida
    The genetics are odd in that the predisposition to have a child spina bifida patientswith good posture and dislocated hips do far better than hydrocephalus.
    http://www.pediatric-orthopedics.com/Topics/Spina_Bifida/spina_bifida.html
    Spina Bifida If ever there were a topic difficult to extract from a pure discussion of embryology , this is it. You may wish to read that section first, as we will not dwell on cause, here. This section is aimed at getting a perspective on the subject. In the most characteristic case, the skeleton spine formation is incomplete in the back to the degree that the spinal cord is not only exposed but extruded outside the body in a sac of covering tissue. That mass protruding from the low back is cystic (cyst = 'cele'). The nerve elements (myelo as in myelin is the nerve portion) might be intact, partially disrupted, or totally lost as a developed tissue. A myelocele is a bulge with nerve in it. If the spinal cord itself is intact and only the spinal cord coverings (meninges) are extruded outside then the sac is only a sac of meningal tissue with fluid. That is a meningocele If only the bones are defective and the spinal cord and its miningeal coverings are intact, and the skin is also intact, then the spina bifida (open spine) isn't open but rather occult ( spina bifida occulta If the incompletely infolded tissues get so developmentally lost as to not know what they are supposed to be, they often guess, and guess badly. We may see streaks of inappropriate vascular dense tissue (

    35. Neural Tube Defects (NTD) - For Patients And Families - The Center For Human Gen
    spina bifida and hydrocephalus Association of Canada (SBHAC) 220388 hydrocephalusSupport Group, Inc Center for Human genetics NTD research information contacts
    http://www.chg.duke.edu/patients/neural.html
    For Patients and Families Neural Tube Defects (NTD) What are Neural Tube Defects (NTDs)?
    Neural tube defects (NTDs) are one of the most common birth defects, occurring in approximately 1 in 1,000 live births in the United States. An NTD is an opening in the spinal cord or brain that occurs very early in human development. The early spinal cord of the embryo begins as a flat region, which rolls into a tube (the neural tube) 28 days after the baby is conceived and when the neural tube does not close completely, an NTD develops. NTDs develop before most women know they are even pregnant. There are two types of NTDs. The most common type of NTDs are called the open NTDs. Open NTDs occur when the brain and/or spinal cord are exposed at birth through a defect in the skull or vertebrae. Examples of open NTDs are spina bifida (myelomeningocele), anencephaly, and encephalocele. The rarer type of NTDs are called closed NTDs. Closed NTDs occur when the spinal defect is covered by skin. Common examples of closed NTDs are lipomyelomeningocele, lipomeningocele, and tethered cord. NTD Prevention
    Researchers have found that 50-70% of NTDs can be prevented when women supplement their diet with folic acid, a water-soluble B vitamin. The Centers for Disease Control (CDC) recommends all women of childbearing age eat a diet high in folic acid or take a multivitamin with 0.4mg of folic acid each day, especially one month prior to conception through the first three months of pregnancy. This dosage is the amount found in most over-the-counter multivitamins. However, women who have had a previous NTD pregnancy are recommended to take an even higher dosage of folic acid prior to planning a pregnancy. They should increase the daily dose of folic acid from 0.4mg to 4.0mg, one month prior to conception through the first three months of pregnancy. The 4.0mg of folic acid should ONLY be obtained through a prescription from the doctor.

    36. The Crusader Online: April 12, 2002 - Run Aids Spina Bifida
    have begun to link it with genetics, environmental factors and a to causing paralysisin some cases, spina bifida can also result in hydrocephalus, or the
    http://www.susqu.edu/crusader/article.cfm?IssueID=34&SectionID=1&ArticleID=1559

    37. Capital Health - Spina Bifida
    genetics/Birth Defects. hydrocephalus, a buildup of cerebrospinal fluidwithin the skull, occurs in many babies with spina bifida.
    http://www.capitalhealth.ca/Health Services/Health Topics/Disorders and Body Sys
    Hospitals Capital Health Link Site Map Media Desk ... Quick Links Genetics/Birth Defects Capital Health Home Your Health Health Topics Disorders and Conditions - Body/Location Systems ... Genetics/Birth Defects Spina Bifida Audio File Spina bifida is a birth defect caused by failure of the lower spine to close properly during the first month of pregnancy. The severity of the defect can range from so mild that it causes no impairment to so severe that the child is unable to walk and has no bladder or bowel control. The degree and type of disability depends upon which nerves are affected and how much. The outlook for each child depends upon the number of abnormalities and their severity. Most children with spina bifida who get proper care live well into adulthood. Spina bifida is a neural tube defect. These are serious birth defects in which there is incomplete development of the brain, spinal cord and/or their protective coverings. Neural tube defects tend to run in families and are thought to result from a combination of genetic and environmental factors. Spina bifida has been linked to a lack of the B vitamin folic acid in early pregnancy. Many cases of spina bifida could be eliminated if all women of childbearing age took 0.4 mg of folic acid daily before becoming pregnant. A health care provider can usually detect spina bifida during pregnancy. If high levels of a certain protein are present in the mother's blood, other tests can be done to identify and confirm the defect.

    38. Genetic Catalog - ABNORMALITIES
    Society of Craniofacial genetics; Fetal Rhabdomyoma of the Tongue WWW link, FAQ,Chat Room; Syringomyelia fact sheet; spina bifida hydrocephalus Association;
    http://www.rusmedserv.com/genetics/catalog/links87.htm
    ABNORMALITIES
    Anatomy
    The Ear
    The Heart
    Lymphatic Circulation
    The Umbrical Cord
    Small and Large Intestines
    Rectum and Anus
    Male Genital System
    Female Genital System
    Cranium
  • Craniofacial Etiology - Home Page (diagrams) craniosynostosis mini fact sheet The Craniofacial Support Group-craniosynostosis Trigonocephaly - MedLine,links
  • 39. Malformaciones Del Sistema Nervioso Central En Una Familia
    genetics; hydrocephalus/genetics;GENETIC COUNSELING Bamforth S, Baird P. spina bifida and hydrocephalus a
    http://www.bvs.sld.cu/revistas/mgi/vol14_3_98/mgi14398.htm
    Indice Anterior Siguiente
    Rev Cubana Med Gen Integr 1998;14(3):282-285 Texto completo
    Malformaciones del sistema nervioso central en una familia
    Elisa Dyce Gordon Resumen: Descriptores DeCS:
    Historia familiar Gran consanguinidad (fig.). Sobrino fallecido por gangliosidosis generalizada. Historia de los embarazos Cariotipo: Ambos normales. Rx: columna lumbo-sacra: Ambos normales.
    Comentario
    Los padres que han procreado un hijo con DTN, sin malformaciones adicionales, tienen un riesgo incrementado de ver nacer otro hijo afectado por un DTN concordante o no con el anterior. aunque generalmente son atribuidas a la herencia multifactorial La consanguinidad para ambos tipos de herencias, juega un importante rol, por lo que se deben evitar los matrimonios entre parientes. SUMMARY: It is reported the appearance of 3 malformations of the central nervous system (2 defects of the neural tube and 1 hydrocephaly) in the offspring of a marriage between cousins. A possible relationship between appearance of these defects and the multifactorial and recessive autosomal inheritances is established. It is recommended to avoid marriage between relatives, as well as to offer genetic counseling and prenatal diagnosis to all those persons who had procreated a child with malformations of the CNS. Subject headings: SPINAL DYSRAPHISM/genetics; ANENCEPHALY/genetics; HYDROCEPHALUS/genetics; GENETIC COUNSELING; CONSANGUINITY; MARRIAGE; FAMILY; PRENATAL DIAGNOSIS.

    40. PR Newswire - A United Business Media Company
    He is the director of the Northern Region genetics Service which heads up bifida andto increase support for people with spina bifida and/or hydrocephalus.
    http://www.prnewswire.co.uk/cgi/news/release?id=49856

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