Question:
Female, 40, Deletion
Is there anything to worry about if someone with PWS is having a Colonoscopy?
Nurse Lynn’s Response:
Individuals with PWS in general have no increased risk for complications of this procedure.
Usually, the most difficult part is the completion of bowel cleanout. Dr. Scheimann recommends using magnesium citrate and clear liquid diet. The most important thing is to get a good cleanout so the physician can get good views.
Make sure that if you are helping your loved one with the bowel preparation for this procedure, to have a plan. For example, consider having a waterproof bed pad, extra clothing, clear access to the bathroom, and if you have carpet leading to the bathroom, perhaps a covering for the floor just in case. I would rather be prepared for the worst and hope for the best.
The individuals that I have helped through this process did just fine and tolerated both prep and procedure well. Best of luck!
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.