Question:
Female, 40 years-old, Deletion
Not every time, but a lot of the time, my daughter will feel like she needs help with her bowel movements, and she feels the need to reach in her rectum to complete the movement. She knows this is not good but worries that if she doesn’t it will come out at a bad time. We have conversations about Is it time for Miralax? Or Dulcolax? She only has a general practitioner at this time and I’m wondering if she should have more in the way of her care. When she was small, we went to the hospitals in Boston but since she’s gotten older and doing well, we have gotten away from all the specialists.
Nurse Lynn’s Response:
It is not uncommon for individuals with PWS to feel the need to “help” themselves have a bowel movement by trying to manually remove the stool. This can lead to rectal ulcers which is another health concern. We know that constipation is a common concern for those with PWS because of decreased fluid intake, genetics, low muscle tone, medications and lack of exercise etc. Medications like MiraLAX are routinely prescribed for individuals to promote regular bowel movements. Making sure that she has adequate fluid intake along with, regular exercise and a cooked fiber-rich diet also help. It sounds like it may be time to incorporate MiraLAX into her medication regimen. It is also a good idea to keep track of her bowel movements on a chart of some sort. I have linked a copy of the Bristol stool chart which is helpful with tracking of BM’s.
Resource:
Bristol Stool scale: Stool types and what they mean (medicalnewstoday.com)
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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.