Question:
Female, 35 years-old, Deletion
For quite a while now, my daughter has occasional spells of burping and complaints about pain in her lower abdominal region. We have been to the Gastro doctor, and my daughter was put on Famotidine and Omeprazole. At this time, she is only on Famotidine, because it didn’t seem like the Omeprazole was really helping. (There were also some research items that we did not like concerning Omeprazole, although both parents take it.)
This condition just seems to be an annoyance, but I was wondering if other PWS ladies or men have this as well. Our daughter did have an Endoscopy (all OK) a couple of years ago when this had been going on earlier. If she eats a piece of bread or tortilla, the burping and pain seem to stop. I don’t think my daughter is faking it.
Nurse Lynn’s Response:
I do think that your daughter should learn/perform Pace and Chase because it could be that she has food sticking in her esophagus. From research and experience from experts, esophageal stasis is extremely prevalent. The combination of rapid eating and food remaining in the esophagus is a strong risk factor for aspiration and choking when ejected from the esophagus (sometimes mistaken for rumination), and even airway occlusion if not ejected since it is possible to block the airway from the esophagus. The best evaluation would be a modified barium swallow that included an esophageal sweep. Below is an article on swallowing issues in PWS.
Resource:
Swallowing-Problems-in-PWS.pdf (pwsausa.org)
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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.