61. Spina Bifida: Neural Tube Defect - Nervous System & Brain Disorders Gastroenterology General Surgery genetics Geriatrics Hematology with SB have hydrocephalus(excessive accumulation What is the Treatment for spina bifida? http://www.medicalconsumerguide.com/primary_care/nervous_system_brain_disorders/

Medical Consumer Information, Articles, Products and Services MEDICAL CONSUMER GUIDE Primary Care Elective Care Dental Vision ... MCG - HOME PAGE Select Specialty :Breast Implants :Chiropractics :Cosmetic/Plastic Surgery :Facial Plastic Surgery :Fertility/Infertility :Hair Loss Treatment :LASIK Vision Correction :General :Cosmetic Dentists :Dental Implants :Laser Dentists :Orthodontists :Pediatric Dentists :Allergy/Immunology :Anesthesiology :Cardiology :Dermatology :Endocrinology :Emergency Medicine :Family Practice :Gastroenterology :General Surgery :Genetics :Geriatrics :Hematology :Internal Medicine :Nephrology :Neurology :Oncology :Ophthalmology :Orthopedics :Pediatrics :Podiatry :Psychiatry :Psychology :Pulmonology :Radiology :Urology SPINA BIFIDA What is Spina Bifida? The three most common types of SB are: myelomeningocele- the severest form, in which the spinal cord and its protective covering (the meninges) protrude from an opening in the spine

62. Glossary Of Genetics Terminology The Genetics Center, Inc. The geneticists at The genetics Center are boardcertified. spina bifida due to aneural tube defect typically in paralysis as well as hydrocephalus ( water on http://www.thegeneticscenter.com/glossary.htm

GLOSSARY OF GENETICS TERMINOLOGY Alpha-fetoprotein - The predominant protein present in fetal blood. Small amounts are present in the maternal circulation during pregnancy, and the values change as the fetus grows. Abnormally high or low values are associated with increased risks of spina bifida and Down syndrome, respectively. Amniocentesis - A procedure for prenatal diagnosis in which about one tablespoon of amniotic fluid surrounding the fetus is withdrawn from the amniotic sac using a very fine needle. Genetic amniocentesis is performed at The Genetics Center. Continuous ultrasound guidance during the amniocentesis makes the 60 to 90 second procedure as safe and painless as possible. Autosomal recessive / dominant - Patterns of inheritance in which females are as likely to be affected as males. In recessive disorders, one gene (of the pair) needs to function properly to prevent the disorder. For a dominant disorder, one gene functioning abnormally is sufficient to cause the disorder. BRCA1 and BRCA2 - Two genes that are important in breast cancer. Certain changes in either BRCA1 or BRCA2 result in an increased risk of developing breast, ovarian, or certain other cancers. BRCA1 was identified in 1994, and BRCA2 was discovered in 1996.

63. AnSWeR - Links people with spina bifida and or hydrocephalus, to extend to medical resources andarticles on spina bifida, support groups genetics Interest Group (CHECK LINK). http://www.antenataltesting.info/links.html

Links to further information After 16, what's new? http://after16.org.uk/index.html This web site is for people who have disabilities and have questions concerning life after school, it provides useful information with regards to money, benefits, transport, leisure, day time work and the law. Antenatal Results and Choices www.arc-uk.org This website offers information and support for people considering pregnancy tests and termination decisions. http://www.asbah.org/ Provides advice and practical support for people with certain disabilities, their families and carers. ASBAH aims to improve services for people with spina bifida and or hydrocephalus, to extend their choices, maximise opportunities for independence and so help integration into the community. BBC Disability website www.bbc.co.uk/ouch Regularly updated website with features and discussion about all aspects of disability. British Council of Disabled People www.bcodp.org.uk Representative body of disabled people's organisations in the UK. Takes a radical view of disability. Children with Spina Bifida. A Resource Page for Parents.

64. Spina Bifida Recurrence with spina bifida, other NTD, hydrocephalus, “water on multifactorial We knowthat spina bifida has both complex process, so both genetics and environment http://www.genesoc.com/counseling/Outlines/spina bifida prenatal.htm

Resources for Genetic Counselors site updated May 10, 2004 outlines links search Spina Bifida-Prenatal Recurrence Risk Counseling Outline Introduction o Introduce myself and others o Assess concerns and what they hope to gain from the session o Discuss reason for referral o Provide overview of session Elicit pregnancy/medical history o Explain why this, along with family history, is important o Pregnancy hx questions: Age at delivery, paternal age Gravida #/Parity #? Ever any SAB’s, stillbirths, EAB’s? When was LMP? What is EDC? When/how was this last determined? Infertility problems? Exposures (including partner exposures)? Medical complications (bleeding, diabetes, HTN, etc?) Prenatal vitamins? Prenatal care? How early, how often? Medical history Any illnesses currently/in past? Any surgeries/hospital stays? Any other medical concerns? What is your occupation? Is there a religion you’d like me to be aware of? Elicit family history and construct pedigree o Anyone else with spina bifida, other NTD, hydrocephalus, “water on the brain”?

65. CIAO :: Clinical Information Access Online Palate Foundation (CPF). , Association for spina bifida and hydrocephalus.-, British Society for Human genetics. -, Cancer Genome Anatomy http://www.ciao.health.wa.gov.au/links.cfm?TopicID=217

66. Disease Information Prematurity. RDS. spina bifida. Apnea of Prematurity. hydrocephalus Fact Sheet. hydrocephalusfrom MedlinePlus. National Newborn Screening genetics Resource Center. http://healthinfo.osfsaintfrancis.org/FamilyRC/diseaseinfo.htm

Disease Information ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH PROVIDER PRIOR TO STARTING ANY NEW TREATMENT OR WITH ANY QUESTIONS YOU MAY HAVE REGARDING A MEDICAL CONDITION. Links to Common Pediatric Disorders Apnea of Prematurity Asthma Bronchopulmonary Dysplasia Childhood Cancer ... Spina Bifida Apnea of Prematurity Apnea of Prematurity - Parents of Preemies Apnea of Prematurity - Nemours Foundation Apnea of Prematurity - Lucille Packard Children's Hospital Asthma Asthma in Children - MedlinePlus Childhood Asthma: an overview - American Lung Association Tips to Remember: Childhood Asthma Recognizing an asthma attack - American Academy of Pediatrics Bronchopulmonary Dysplasia Chronic Lung Disease - Lucille Packard Hospital BPD - Bronchopulmonary Dysplasia - American Lung Association Bronchopulmonary Dysplasia - University of Washington Bronchopulmonary Dysplasia - Nemours Foundation ... Cleft Lip and Palate - Gale Encyclopedia of Childhood Childhood Cancers Childhood Cancer Home Page - National Cancer Institute Children's Cancer Web Outlook:Life Beyond Childhood Cancer Candlefighters: Childhood Cancer Foundation ... Children and Cancer - American Cancer Society Congenital Heart Disease Congenital Heart Information Network Children's Cardiomyopathy Foundation Congenital Heart Defects from NOAH Congenital Heart Disease from MedlinePlus ... If your Child has a Heart Defect Cystic Fibrosis Cystic Fibrosis Foundation Facts about Cystic Fibrosis Cystic Fibrosis - JAMA Patient Page Cystic Fibrosis - Nemours Foundation Diabetes

67. Medical References: Spina Bifida with the most severe form of spina bifida develop hydrocephalus, or fluid on http://www.marchofdimes.com/professionals/681_1224.asp

View All Chapters Find Your Local Chapter June 11, 2004 Select one Folic Acid Pregnancy Prenatal Screening Infections/Diseases Loss Concerns Newborn Information Birth Defects Polio Genetics Research Funding Perinatal Statistics Medical References Continuing Education ... Prematurity Quick Reference and Fact Sheets Spina Bifida Spina bifida is the most common of a group of birth defects called neural tube defects (NTDs). The neural tube is the embryonic structure that develops into the brain and spinal cord. Often called open spine, spina bifida affects the backbone and, sometimes, the spinal cord. It is among the most common severe birth defects in the United States, affecting 1,500 to 2,000 babies (one in every 2,000 live births) each year. Spina bifida and other NTDs occur more frequently among Hispanics and whites of European extraction and, less commonly, among Ashkenazi Jews, most Asian ethnic groups and African-Americans. How does spina bifida affect a child? In the embryo, there is a tiny ribbon of tissue that folds inward to form a tube. This structure, called the neural tube, forms by the 28th day after conception. When this process goes awry and the neural tube does not close completely, defects in the spinal cord and in the vertebrae (small bones of the spine) can result. There are three forms of spina bifida: Occulta.

68. Abstract Of SANDI Project genetics and Folic Acid. genetics. Researchers have found that both geneticsand folic acid play a role in the occurrence of spina bifida. http://ped1.med.uth.tmc.edu/spinabifida/genetics.html

Genetics and Folic Acid Genetics Researchers have found that both genetics and folic acid play a role in the occurrence of spina bifida. One portion of the SANDI Project is a genetics study. Our researchers can look at the genes found in blood to search for causers of spina bifida. Kids enrolled in the SANDI Project will have a small blood sample taken (about one teaspoon) for analysis. We also need the blood from the child's parents to complete the analysis. Folic Acid Each year one in 1000 babies born in North America and one in 750 babies in Canada is born with spina bifida. Even more are born with other neural tube defects (NTDs). NTDs are birth defects in which the brain, spinal cord and/or the bones covering these organs do not develop properly. These defects occur within the first month of pregnancy, before most women even know they are pregnant. Folic acid can help prevent both spina bifida and anencephaly, or a defect where babies are born with incompletely developed skulls and brains. Often anencephalic babies miscarriage or die shortly after birth. Researchers have found that women of child-bearing age who take just 400 micrograms of folic acid a day can decrease their chance of having a baby with spina bifida by . The problem is that few women know that 400 micrograms (mcg), or .4 milligrams, of B vitamin folic acid can be so important.

69. The SANDI Project Participation in the genetics study involves donation of a blood sample about material(DNA) from the families to identify genes that cause spina bifida. http://ped1.med.uth.tmc.edu/spinabifida/sandi.html

Project Goals The SANDI Project is a collaborative effort between the University of Texas-Houston, The University of Houston, The Hospital for Sick Children in Toronto, Canada, Baylor College of Medicine, Hermann Hospital, Texas Children's Hospital, and Shriners Children's Hospital. The project aims to identify factors genetic, environmental, and of the Central Nervous System responsible for the variations in the neurobehavioral outcomes of children with spina bifida. In order to understand more about the development of children with spina bifida, we administer different tests to evaluate a child's ability to think, remember, and learn. We also assess the child's behavioral adjustment. We then relate this data to information about the child's health and medical status, including an MRI of the brain, and the environment in which he/she develops. Over 700 children and their families will participate in the SANDI Project Description of the Core Study A child enrolled in the SANDI Project will be asked to take tests of memory, language, writing, and other abilities that are commonly used to evaluate a child's development. While a child receives the assessment, the child's caregiver will be asked to complete forms that ask about the child's behavior and environment. Two of the procedures given to a child enrolled in the project require videotaping to permit later coding. The tests involve:

70. Spina Bifida -- Disability Awareness Month spina bifida causes lifelong paralysis and in many cases incontinence (lackof bowel and bladder control) and hydrocephalus (fluid on the brain). http://specialchildren.about.com/cs/spinabifida/l/aa100400a.htm

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Parenting Special Needs Home Essentials ... Start a Support Group zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Autism Behaviors Advocacy Development ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Parenting Special Needs newsletter. Search Parenting Special Needs October is Spina Bifida Awareness Month Spina Bifida at Planet Zachary Meet Kimberly Zink, proud Mama to Zach. Spina Bifida is a Neural Tube Defect (NTD). Neural Tube Defects are present at birth. Basically, the involvement affects typical development of the brain and or spinal column. The three types of NTD's are called: anencephaly, encephalocele, and Spina Bifida. Approximately one out of 1,000 newborns are born with this disability. Spina Bifida is an opening in the spinal column, with the spinal cord protruding. Surgery to close a newborn's back typically occurs within the first twenty-four hours after birth, thus reducing the risk of infection and even greater complications. Spina Bifida causes lifelong paralysis and in many cases incontinence (lack of bowel and bladder control) and hydrocephalus (fluid on the brain). The effects of Spina Bifida are permanent and will require ongoing medical treatment including surgeries, physical therapy, adaptive equipment and modifications.

71. Untitled Document Australian spina bifida and hydrocephalus Association. http://www.tvcc.on.ca/newdocs/links.php3?sublabels=Spina Bifida

72. Special Kids Today – Spina Bifida A New Hope is so much we don’t know about genetics and how to cut down on the severity of thehydrocephalus that often accompanies spina bifida, thus, leading to http://specialkidstoday.com/resources/articles/spinabifida.htm

Search the Network: news resources community diaries ... shop Spina Bifida A New Hope By Kelly Burgess Angeline Gonzalez-Abreu of Hollywood, Fla., is a bright, beautiful, chatty 2-year-old. She’s also strong-willed and determined, qualities that will stand her in good stead as she faces the challenges of growing up with spina bifida. “I think Angie is very special, but I don’t want her to think she’s ‘special needs’ because I don’t want her to view herself in that way,” says Angeline’s mother, Emily Gonzalez-Abreu. “I want her to keep that strong urge to try and to succeed.” According to the Spina Bifida Association of America, spina bifida is the most commonly-occurring permanently disabling birth defect, affecting one of every 1,000 newborns. In spite of that, spina bifida has a short history simply because until just 15 or 20 years ago, children with spina bifida rarely lived past childhood. However, in that time, advances in surgical care, infection control and an increased focus on adaptive life skills have allowed children with spina bifida to grow into adults with spina bifida. And they are adults who are not disabled but able and willing to meet the challenges of living in a world that has to be continually educated about adapting to all abilities. About Spina Bifida Spina bifida is a neural tube defect that occurs early in pregnancy, often before a woman even realizes she is pregnant. At some point during this time in the embryo’s development, the neural tube (which develops into the brain, spinal cord and vertebral column) fails to form properly, leaving the spinal cord exposed. The result is varying degrees of paralysis and loss of sensation.

73. Neural Tube Defects to promote the prevention of spina bifida and to enhance the lives of all affected S Association for spina bifida and hydrocephalus United Kingdom http://ibis-birthdefects.org/start/ntdfact.htm

Tips for printing Neural Tube Defects (NTD) Anencephaly - Spina Bifida About I.B.I.S. Home Search Topics Search all contents ... "In the News" Messages... Questions/comments Report Dead Links S.O.S. - Exchange Join I.B.I.S. ... Etchings Includes Anencephaly Encephalocele Folic Acid or FA Hydrocephalus - Arnold Chiari - Allied Disorders Meningocele - Meningomyelocele - Meningoencephalocele Meckel or Meckel Gruber or Dysencephalia splachnocystica Neural Tube Defects NTD Spina Bifida A Selection of Internet Sites [*] Outstanding [P] For Professionals [S] Support Group [Spanish] [Ukrainian] [*][P] Folic Acid for the Prevention of Neural Tube Defects Policy Statement - American Academy of Pediatrics (1993). "NTDs are among the most common birth defects that result in infant mortality and serious disability ..." Knowledge and Use of Folic Acid by Women of Childbearing Age Requires Acrobat Reader JAMA Women's Health and MMWR report. Results of the 1998 March of Dimes Birth Defects Foundation sponsored Gallup Organization survey of 2115 women. Folic Acid National Campaign - CDC, March of Dimes ... National Campaign on Folic Acid - Gate Page Folic Acid for Healthy Babies Prevention Model and Resource Guide NTD - Frequently asked Questions " ... how can women get folic acid? ... "

74. Public Pages - Other Resources International Federation for hydrocephalus and spina bifida. What is spinabifida? spinal Cord Injury. Cure Paralysis. Spine Surgery Home Page. http://www.neurosurgery.org/pubpages/patres/otheresrcs.html

Aneurysms Brain Diseases and Disorders Brain Tumors Craniosynostosis ... Government Aneurysms Brain Aneurysm Index Intracerebral Aneurysm FAQ MGH Brain Aneurysm/AVM Center Brain Diseases and Disorders Alzheimer Disease Web, University of Melbourne Arnold Chiari Malformation Attention Deficit Hyperactivity Disorder (ADHD) Children and Adults with Attention Deficit Disorders (CHADD) 499 NW 70th Av., Suite 109 Plantation, FL 33317 Phone: (800) 233-4050 Brain Surgery Information Center Brain Vascular Malformation Index Children's Brain Disease Foundation 350 Parnassus Ave., Ste. 900 San Francisco, CA 94117 Phone: (415) 565-6259 Southern Caregiver Resource Center San Diego, CA Phone: (800) 827-1008 Brain Tumors The American Brain Tumor Association (ABTA) 2720 River Road, Suite 146 Des Plaines, IL 60018-4110 Phone: (847) 886-2282 E-mail: ABTA@aol.com Benign Central Nervous System Tumor Index Links to information about meningioma, epidermoid, hemangioblastoma, and other benign brain, spine, and nerve tumors. Brain Surgery Information Center Brain Tumor Index Links to information about astrocytoma, glioblastoma, oligodendroglioma and other brain tumors.

75. Spina Bifida - DrGreene.com or paralysis, decreased sensation, and hydrocephalus. more common in those with spinabifida. http://www.drgreene.com/21_1191.html

QUICK SEARCH A - Z Guide Allergies Allergy Care Guide Asthma Care Guide Bedwetting Breastfeeding Childhood Obesity Diabetes Care Guide Ear Infections Genetics Immunizations Infectious Diseases Parenting Potty Training Rashes Safety Sleep About DrGreene.com Archives About Us Context Reviews Awards Readers Comments Press Room Partners and Supporters Topic Centers Contact Us Pediatric Information A-Z Guide Allergy Care Guide Asthma Care Guide Diabetes Care Guide Discussion Boards DrGreene´s Chats DrGreene´s Event Schedule FAQ Fast Facts Feature Articles Guidelines Pediatric Updates Special Feature Top Tips Community Activty Guide Advanced Search Community Central Chat Chat Schedule Cute Faces Discussion Boards Family Friendly Recipes Parent-to-Parent Resources The DrGreene Team Newsletter Prenatal Newborn Infants Toddlers Pre-Schoolers School Age Teens / Adolescents Multimedia Library Fertility Children's Health Spina Bifida Related concepts: Anencephaly, Encephalocele, Myelomeningocele, Neural tube defects Introduction: Before many women even realize that they are pregnant , their unborn baby’s neural tube has formed and closed at both ends. This tube will become the baby’s spinal cord.

76. Hydrocephalus - DrGreene.com Sometimes hydrocephalus is the result of other tube defects (eg spina bifida), meningitis,encephalitis http://www.drgreene.com/21_1120.html

QUICK SEARCH A - Z Guide Allergies Allergy Care Guide Asthma Care Guide Bedwetting Breastfeeding Childhood Obesity Diabetes Care Guide Ear Infections Genetics Immunizations Infectious Diseases Parenting Potty Training Rashes Safety Sleep About DrGreene.com Archives About Us Context Reviews Awards Readers Comments Press Room Partners and Supporters Topic Centers Contact Us Pediatric Information A-Z Guide Allergy Care Guide Asthma Care Guide Diabetes Care Guide Discussion Boards DrGreene´s Chats DrGreene´s Event Schedule FAQ Fast Facts Feature Articles Guidelines Pediatric Updates Special Feature Top Tips Community Activty Guide Advanced Search Community Central Chat Chat Schedule Cute Faces Discussion Boards Family Friendly Recipes Parent-to-Parent Resources The DrGreene Team Newsletter Prenatal Newborn Infants Toddlers Pre-Schoolers School Age Teens / Adolescents Multimedia Library Fertility Children's Health Hydrocephalus Related concepts: Communicating hydrocephalus, Noncommunicating hydrocephalus, Obstructive hydrocephalus, Water on the brain Introduction: The brain and spinal cord are bathed and protected by cerebrospinal fluid (CSF). A

77. Clinical Neurogenetics, Wake Forest The Wake Forest hydrocephalus Index; The Wake Forest Epilepsy Index; The Wake Foresthydrocephalus Index; The Wake Forest spina bifida/Myelodysplasia Index; The http://www.wfubmc.edu/surg-sci/ns/ngenet.html

Clinical Neurogenetics Department of Neurosurgery Wake Forest University School of Medicine Links to information on neurogenetic diseases treated by neurosurgeons: Neurofibromatosis, Tuberous Sclerosis, and von Hippel-Lindau Disease. Links to more information on neurofibromatosis (NF-1 and NF-2) Links to more information on tuberous sclerosis Links to more information on Von Hippel-Lindau disease Von Hippel-Lindau Disease and Hemangioblastoma Von Hippel-Lindau Disease Family Alliance Homepage VHL Family Alliance Handbook: What you Need to Know about VHL VHL Family Alliance via email More information about VHL What is Von Hippel-Lindau Disease? An International Listing of VHL Support Organizations Information in French Information in Spanish Information in German The Danish VHL Association Danish and English von Hippel-Lindau Disease from the National Institute of Neurological Disorders and Stroke (USA) What is von Hippel-Lindau Disease? Is there any treatment? What is the prognosis? What research is being done? ... Stereotactic Radiosurgery for Hemangioblastomas of the Brain. Ajay Jawahar, M.S., Douglas Kondziolka, M.D., Yolanda I. Garces, M.D., John C. Flickinger, M.D., Bruce E. Pollock, M.D., and L. Dade Lunsford, M.D. UPMC Presbyterian, Pittsburgh, PA. National Cancer Institute Kidney Cancer Web Page Galaxy.Net's

78. TBDHU - MSS For Open Neural Tube Defect Or Spina Bifida spina bifida is an opening in the bones around the the skin and tissues around thespinal cord as other medical problems such as hydrocephalus (an accumulation http://www.tbdhu.com/factsheets/MSS_ONTD.htm

Home About Us Breaking News Pick a Topic Community Involvement Disease Prevention Healthy Living Food Hazard Investigation Inspections Injury Prevention Sexual Health Pick an Audience Medical Professionals Parents Seniors Teachers Teens Women FactSheets Site Map Contact Us MSS for Open Neural Tube Defect What is MSS? MSS is a blood test available to all pregnant women in Ontario. MSS measures three different hormones that have been produced by the baby's liver and the placenta. These hormones pass into the mother's blood stream in small amounts. MSS measures these amounts and compares them to the average level for women in the same week of pregnancy. From this information, the chance of a baby having trisomy 18, Down syndrome, or open neural tube defect (spina bifida) is calculated. What Does Screen Positive Mean? A screen positive result means the chance of the baby having an open neural tube defect is increased compared to other pregnancies. Only further testing can tell if the baby really has an open neural tube defect. When the maternal serum screen is screen positive for an open neural tube defect, most times the baby is healthy and does not have a neural tube defect. What is an Open Neural Tube Defect?

79. RACGP | Spina Bifida Continence Management CNS Conditions on Case Management hydrocephalus affects most people with spina bifidaand can impact upon continence management adversely in two main areas. http://www.racgp.org.au/folder.asp?id=296

80. RACGP | References | Spina Bifida Continence Management Current. Journal of the spina bifida and hydrocephalus Association of Ontario. Summer1997. Anderson PD. 2000. Association for spina bifida and hydrocephalus. http://www.racgp.org.au/document.asp?id=5301

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