21. Asher's Craniosynostosis Home Page Asher's craniosynostosis home page http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

22. Positional Plagiocephaly (Abnormal Head Shape, Flat Head Syndrome) Provides information on the prevention, diagnosis and treatment of infant positional plagiocephaly (abnormal head shape, flat head syndrome http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

23. Cranioysynostosis And Positional Plagiocephaly Support, Inc. A national non profit organization that assists families that have, or suspecttheir child has, craniosynostosis or Positional Plagiocephaly. http://www.cappskids.org/

6905 Xandu Court Fredericksburg, VA 22407 CAPPSORG@aol.com WELCOME to the CAPPS Website! Craniosynostosis And Positional Plagiocephaly Support, Inc. CAPPS is a non-profit, 501 (c)(3) tax exempt organization. Click below for information on the different conditions: Help Raise Money for CAPPS NEW: GET YOUR CAPPS AWARENESS BANDS CRANIOSYNOSTOSIS POSITIONAL PLAGIOCEPHALY STATE CONTACTS AND DOCTOR LISTINGS ... CAPPS SUPPORT BOARD Click the above Logo to enter our CAPPS store for awesome items you can share with family and friend and help CAPPS raise money and awareness The information on this website should not be used for medical advice. Medical or health advice should be provided only by medical or health professionals. ©Craniosynostosis And Positional Plagiocephaly Support, Inc.2001 Website not working properly? Contact the Webmaster

24. The Simian Line Her quotations collection, information on selfinjury, anosmia, craniosynostosis, and other details of her life. http://www.angelfire.com/md2/simianline/

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25. Proline To Arginine Mutations In FGF Receptors 1 And 3 Result In Proline to arginine mutations in FGF receptors 1 and 3 result in Pfeiffer and Muenke craniosynostosis syndromes through enhancement of FGF binding http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

26. CAPPS Cranio FAQ craniosynostosis is a congenital anomaly characterized by the premature closureof one or Most children with craniosynostosis do not have any symptoms; http://www.cappskids.org/CranioFAQ.htm

6905 Xandu Court Fredericksburg, VA 22407 CAPPSORG@aol.com FREQUENTLY ASKED QUESTIONS OF CRANIO What is Craniosynostosis Craniosynostosis is a congenital anomaly characterized by the premature closure of one or more cranial sutures (the fibrous joints between the bones of the skull). The disorder results in an abnormal skull and head shape. Most cases are sporadic, although there are several genetic syndromes with Craniosynostosis. Disorders of the fibroblast growth factor receptor molecule have been recently found in some cases of hereditary Craniosynostosis. What Are The Symptoms of Craniosynostosis? Most children with Craniosynostosis do not have any symptoms; the head shape is abnormal, and the face may be malformed in certain cases. Rarely, symptoms of increased pressure in the head such as headaches, decreased appetite, vomiting, or even developmental delays or mental retardation may occur. How Does A Craniofacial Anomaly Occur? Five separate bones make up the cranium of the head: the occipital bone (back portion of the skull); two parietal bones (on either side of the skull); and two frontal bones (front portion of the skull). The bones, which are in place by the 5th month of gestation, are like pieces of a puzzle, and are initially separated by sutures (or fibrous joints). The skull bones, coupled with the sutures, form a protective shield for the brain. As the brain grows, the sutures allow the skull to expand rapidly. If for any reason one or more of the sutures closes too early, the skull grows in a different direction where the bones are not resisting growth, thereby resulting in skull deformities.

27. Faces Support and resources concerning craniofacial disorders including information on 28 specific craniofacial disorders. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

28. CCAkids.com A national, nonprofit organization, headquartered in Dallas, Texas, dedicated to improving the quality of life for people with facial differences and http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

29. Introduction In moderate craniosynostosis with only one suture involved increased intracranial The surgical treatment of craniosynostosis has been transformed by the http://www.erlanger.org/craniofacial/book/craniosynostosis/cranio_1.htm

30. Asher's CS Home Page Describes a family's experience with CS. Includes information and links about the condition and its treatment. http://www.geocities.com/HotSprings/Villa/3462/index.html

Asher's Craniosynostosis home page Contents Asher's Story Links to information about Craniosynostosis Contact Information Asher's Story Asher Kenan was born in South Korea on April 7, 1995. He arrived in the United States that Labor Day and was placed into the arms of his adoptive family. We had read in his medical reports that his occipital area (the back of his head) was "flattened" and his foster mother had been instructed to position him on his sides when lying down. When he came, his face was absolutely adorable but when he turned sideways it was a startling sight. The back of his head was completely flat and seemed to end evenly with the back of his neck. Later that day we also discovered that he had no soft spot and that his skull seemed to be bulging out over the top of his ears. Still, we believe it was all due to the Korean practice of sleeping babies on their backs and that, in time, his head shape would normalize. Four days after his arrival, we took Asher for a check up with our family doctor. I couldn’t help but notice the doctor’s worried look when he saw us in the hall. The doctor carefully examined Asher and then told me, "I think he is a brachy baby. We’ll need a skull x-ray to be sure". I reluctantly consented but asked few questions believing that the doctor was simply culturally biased and that the condition was purely positional. Late that Friday night, the doctor called us at home. His fears were valid. Both of the lambdoid sutures in Asher’s skull were fused. That was the first time I had ever heard the word "craniosynostosis".

31. Craniosynostosis craniosynostosis is caused by the premature closing of one or more of the suturesof the At this time, doctors are unsure why craniosynostosis happens. http://www.faces-cranio.org/Disord/Cranio.htm

The National Craniofacial Association P. O. Box 11082 * Chattanooga, TN 37401 Craniosynostosis What is Craniosynostosis? Craniosynostosis is caused by the premature closing of one or more of the sutures of the bones which make up the skull. Usually, CT scans are taken to determine if the abnormal skull shape is craniosynostosis, rather that just a result of fetal head position or birth trauma. There are four types of craniosynostosis: Scaphocephaly is caused by the fusion of the sagittal suture which runs from front to back down the middle of the top of the skull. This is the most common type of craniosynostosis. Characteristics include: a long narrow shaped head from front to back narrow from ear to ear the head appears boat-shaped Trigonocephaly is the fusion of the metopic suture, which runs from the top of the head, down the middle of the forehead, towards the nose. Characteristics include: triangular shaped forehead eyes are closer together than usual Plagiocephaly is the premature fusion of one of the coronal sutures, which extend from ear to ear over the top of the head. Characteristics include: fusion of either the right or left side the forehead and brow look like they are pushed backwards the eye on the affected side has a different shape than the one on the unaffected side Brachycephaly results when both sides of the coronal sutures fuse prematurely. Characteristics include:

32. NeurosurgeryToday.org | What Is Neurosurgery | Patient Education Materials | Cra craniosynostosis is a congenital deformity of the infant skull that results craniosynostosis is usually apparent in infancy and is characterized by an http://www.neurosurgerytoday.org/what/patient_e/craniosynostosis.asp

Search: Home What is Neurosurgery AANS National Neurosurgical Procedural Statistics Report Camera Ready Feature Articles ... Find a Board-Certified Neurosurgeon Legislative Activities Library Media Center Research ... Professional Information: AANS.ORG Site Map View Printer Friendly Adult Onset Hydrocephalus Anatomy of the Brain ... Trigeminal Neuralgia Craniosynostosis and Craniofacial Disorders March, 1999 Craniosynostosis is a congenital deformity of the infant skull that results when the skull sutures (fibrous joints) between various skull bones fuse improperly. Skull growth is limited at the fused suture, and growth at the remaining sutures results in an abnormal shape to the infant skull. Craniosynostosis is usually apparent in infancy and is characterized by an abnormal but characteristic head shape, depending upon how many, and which, sutures are involved. In most cases, the problem is solely cosmetic and leads to an abnormal head shape; sometimes, the growth of the facial bones is affected as well. Rarely is the growth of the skull restricted enough to cause increased pressure in the head and lead to headaches, visual loss, or developmental delays. The severity of the deformity depends on which sutures close, the point in the development process that the closure occurred, and the success or failure of the other sutures to compensate by expansion.

33. Asher's CS Home Page Describes a family s experience with CS. Includes information and links aboutthe condition and its treatment. http://www.geocities.com/HotSprings/Villa/3462/

Asher's Craniosynostosis home page Contents Asher's Story Links to information about Craniosynostosis Contact Information Asher's Story Asher Kenan was born in South Korea on April 7, 1995. He arrived in the United States that Labor Day and was placed into the arms of his adoptive family. We had read in his medical reports that his occipital area (the back of his head) was "flattened" and his foster mother had been instructed to position him on his sides when lying down. When he came, his face was absolutely adorable but when he turned sideways it was a startling sight. The back of his head was completely flat and seemed to end evenly with the back of his neck. Later that day we also discovered that he had no soft spot and that his skull seemed to be bulging out over the top of his ears. Still, we believe it was all due to the Korean practice of sleeping babies on their backs and that, in time, his head shape would normalize. Four days after his arrival, we took Asher for a check up with our family doctor. I couldn’t help but notice the doctor’s worried look when he saw us in the hall. The doctor carefully examined Asher and then told me, "I think he is a brachy baby. We’ll need a skull x-ray to be sure". I reluctantly consented but asked few questions believing that the doctor was simply culturally biased and that the condition was purely positional. Late that Friday night, the doctor called us at home. His fears were valid. Both of the lambdoid sutures in Asher’s skull were fused. That was the first time I had ever heard the word "craniosynostosis".

34. Michal Glanz Craniosynostosis English and Hebrew information on craniosynostosis based on the personal case of Michal Glanz from Israel. http://www.geocities.com/michalglanz

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35. Grand Rounds Archives The syndromes associated with craniosynostosis can be further broken down by External canal atresia is also a feature of craniosynostosis syndromes. http://www.bcm.edu/oto/grand/62493.html

Grand Rounds Archives The information contained within the Grand Rounds Archive is intended for use by doctors and other health care professionals. These documents were prepared by resident physicians for presentation and discussion at a conference held at The Baylor College of Medicine in Houston, Texas. No guarantees are made with respect to accuracy or timeliness of this material. This material should not be used as a basis for treatment decisions, and is not a substitute for professional consultation and/or peer-reviewed medical literature. CRANIOSYNOSTOSIS SYNDROMES J. Cary Moorhead, MD June 24, 1993 Craniosynostosis arises from the premature closure of cranial suture lines, which leads to maldevelopment of the cranial cavity and other craniofacial features. It is a feature of a multitude of medical conditions. These can be grossly divided into those that are associated with syndromes and those that are not. The syndromes associated with craniosynostosis can be further broken down by etiology into those resulting from a monogenic, or Mendelian, mode of inheritance, from specific chromosomal defects, from environmental teratogens, and from other factors which are as yet unknown. The syndromes covered in this review are inherited in a monogenic fashion, and represent some of the more common syndromes. Apert's syndrome is characterized by irregular craniosynostosis, midfacial hypoplasia, and symmetric syndactyly of the hands and feet. The incidence is quoted at 1 in 115,000 births, although this may be an underestimate. Cases are usually sporadic mutations, although an autosomal dominant mode of transmission from affected parents has been shown.

36. Healthubs.com A brief definition of craniosynostosis, followed by links to research articles, photos, clinical trials and case reports. http://www.healthubs.com/craniosynostosis

Click here to go to healthubs.com Click here to go to healthubs.com

37. Craniosynostosis.Info craniosynostosis refers to the early (premature) fusion of the sutures of thebone of the skull. http://www.craniosynostosis.info/

38. Craniosynostosis (premature Sutural Fusion) a CHORUS notecard document about craniosynostosis (premature sutural fusion) http://chorus.rad.mcw.edu/doc/00102.html

CHORUS Collaborative Hypertext of Radiology Musculoskeletal system About CHORUS Search Feedback craniosynostosis (premature sutural fusion) males (75%) sagittal (56%) scaphocephaly/dolichocephally bilateral coronal or lambdoidal (11%) brachy-, turri- or acrocephaly associated with: Apert syndrome Crouzon syndrome Pfeiffer syndrome unilateral coronal or lamdoidal (7%) plagiocephaly metopic trigonocephaly closure of all sutures except squamosal oxycephally intrauterine closure of all sutures except squamosal Kleeblatschaedel Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 26 May 2004 Related CHORUS documents: scaphocephaly Apert syndrome Crouzon syndrome clover-leaf skull (Kleeblatschaedel) ... harlequin eye Search for related articles: AJR American Journal of Roentgenology PubMed : index to biomedical literature ... Medical College of Wisconsin

39. Craniosynostosis - Lucile Packard Children's Hospital The craniosynostosis Clinic at Lucile Packard Children s Hospital is open every2nd and 4th Wednesday of the month. It provides comprehensive diagnostic http://www.lpch.org/clinicalSpecialtiesServices/ClinicalSpecialties/PlasticSurge

Craniofacial Anomalies Hand and Upper Extremity Surgery Obstetrical Brachial Plexus Palsy Oral and Maxillofacial Surgery ... Stanford Researcher's Findings May Shed Light on Common, Deadly Birth Defect Craniosynostosis Location: Mary L. Johnson Pediatric Ambulatory Care Center 730 Welch Road Palo Alto, CA 94304 Click here for map Clinic/Suite: Surgical Specialties Mailing Address: 725 Welch Road, Mail Code 5890 Palo Alto, CA 94304 Contact Phone: Fax Number: Days and Hours: Wednesday 8:00 am - 5:00 pm Craniosynostotis Clinic Overview The Craniosynostosis Clinic at Lucile Packard Children's Hospital is open every 2nd and 4th Wednesday of the month.  It provides comprehensive diagnostic evaluation and treatment of children with abnormal head shape, head anomalies or premature fusion of cranial suture such as: Craniosynostosis Deformational Plagiocephaly Torticollis The clinic practices a multidisciplinary approach to care and counseling of patients and families.  The team includes participation from: Plastic Surgery Craniofacial Anomalies Rehabilitation Medicine Neurosurgery Faculty and Staff Elena M. Hopkins, RN, MS, PNP

40. Craniosynostosis - Lucile Packard Children's Hospital craniosynostosis is a condition in which the sutures close too early, craniosynostosis occurs in one out of 2000 live births and affects males twice as http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/craniofacial/cranio.html

Craniofacial Anomalies Ear, Nose and Throat (ENT) Oral and Maxillofacial Surgery Plastic Surgery Clinic ... Stanford, Lucile Packard Researchers Uncover Mystery Behind How Skull Plates Fuse Craniofacial Anomalies Craniosynostosis What is craniosynostosis? The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull. Craniosynostosis is a condition in which the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance. What causes craniosynostosis? Craniosynostosis occurs in one out of 2,000 live births and affects males twice as often as females. Craniosynostosis is most often sporadic (occurs by chance). In some families, craniosynostosis is inherited in one of two ways: autosomal recessive Autosomal recessive means that two copies of the gene are necessary to express the condition, one inherited from each parent, who are carriers. Carrier parents have a one in four, or 25 percent, chance with each pregnancy, to have a child with craniosynostosis. Males and females are equally affected.

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