Caudal Regression Syndrome/Sacral Agenesis

Wednesday, October 29, 2008

Education and IDEA Links

Here are some helpful links about education and children with disabilities.

US Department of Education: IDEA
Technical Assistance Alliance for Parent Centers
Education Law Center

Preschools and Day Cares
The most essential for preschool and day care is Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act

Pennsylvania-Specific Education Links
Early Intervention in Pennsylvania
National Parenting Education Network

504 Plans and Universal Design
What is a 504 Plan?
Sample 504 Plans
504 Plan for a Child with Caudal Regression Syndrome
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  • What Is Caudal Regression Syndrome?

Our Journey with CRS/SA

When my son was born with CRS/SA, I had no clue what it was or what we were dealing with. Despite working as an editor of medical textbooks for more than 10 years, I had never even heard of this condition. This blog is meant to be the kind of resource I wish I had when my son was first diagnosed.

Our Story

  • Jordan's CaringBridge Page
  • River of Jordan

General CRS/SA Info

  • Caudal Regression Syndrome
  • Caudal Regression Syndrome Association
  • Congenital Spinal Deformity (eMedicine)
  • National Organization for Rare Disorders: Caudal Regression Syndrome
  • Sacral Agenesis (Wikipedia)

Peeps with CRS/SA

  • Athletes with CRS/SA
  • Cody McCasland
  • Debbie Mudgeway
  • Joanne Fluke
  • Kevin Michael Connolly
  • Kurt Fearnley
  • Rosemary Siggins

Adaptive Technology

  • The Family Center on Technology and Disability

Bowel

  • Bowel Management Can Be Successful for Most Patients with Fecal Incontinence
  • Cincinnati Children's Hospital: Bowel Management
  • Pull-Thru Network

Braces and Shoes

  • Cascade
  • Donate Used Orthotics
  • Hatchbacks

Causes

  • New Studies on Single Umbilical Artery and Caudal Regression Syndrome
  • The Diabetes Thing

Disability

  • Disability is Natural
  • Disability Studies Blog
  • Ouch
  • Ragged Edge
  • The Invisible Disabilities Advocate

Early Intervention

  • Early Intervention Resources

Education and IDEA

  • 504 Plan for a Child with Caudal Regression Syndrome
  • Education and IDEA Links

Latex

  • Creating a Latex-Safe School for Latex-Sensitive Children
  • Latex Alergy Links

Medical Supplies

  • Achievement Products
  • Adaptive Mall
  • Cascade
  • Materials Exchanges in the Northeast
  • Sunrise Medical
  • Walk Easy
  • Walking Equipment

Message Boards

  • Caudal Regression Syndrome
  • Sacral Agenesis
  • Sacral Agenesis Australia

Neurosurgery

  • Merck Manuals: Spinal Cord
  • Spinal Nerve Function
  • Tethered Spinal Cord

Orthopedics

  • Clubfoot Club
  • Cool Research: Walking Devices
  • MD Orthopaedics
  • Serial Casting
  • To Parents of Children Born with Clubfeet

Parent Support

  • ***NEW PARENTS: START HERE!***
  • National Dissemination Center for Children with Disabilities
  • Parent Education Network
  • Parents Involved Network
  • Partners in Policymaking
  • You Know You’re the Parent of a Child with Caudal Regression When…

Physical Therapy

  • Pediatric Physical Therapy

Recreation

  • Athletes with CRS
  • Recreation Links
  • Wheelchair Ballroom Dancing

Spina Bifida

  • Spina Bifida Association
  • Spina Bifida Research Bibliography

Urology and Potty Training

  • Bladder Augmentation and Incontinence Surgery
  • Catheterisation using a Mitrofanoff
  • Ditropan
  • Growing Bladders
  • Neurogenic Bladder
  • Neurogenic Bladder
  • Potty Training Children with Special Needs
  • SBA Fact Sheet: Urologic Care and Maintenance
  • Toilet Training: The Great Parenting Challenge
  • Urinary Nerve Rewiring
  • Urinary Reflux in Children
  • Urodynamic Testing
  • Urological Care of Children with Spina Bifida

Blog Archive

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Blogging Against Disablism Day

Blogging Against Disablism Day, May 1st 2009

Labels

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What is caudal regression syndrome/sacral agenesis?

Caudal regression syndrome/sacral agenesis is a rare disorder characterized by abnormal development of the lower spine end of the developing fetus. A wide range of abnormalities may occur including partial absence of the tailbone end of the spine causing no apparent symptoms, to extensive abnormalities of the lower vertebrae, pelvis, and spine. Neurologic impairment and an inability to control urination and bowel movements (incontinence) may occur in severe cases. (Adapted from NORDs.)

Note: I am a parent, not a medical professional. I am speaking from first-hand experience only with my one child. This blog is not intended to serve as or to replace medical advice. Every effort has been made to offer information that is as accurate as possible. Any information contained in this web site is offered for reference purposes only and has been obtained from a variety of sources and, as such, is subject to change without notice.
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