Respiratory illness in persons with Prader-Willi syndrome (PWS) can be extraordinarily complicated and the course of the illness is often more serious than it is for others. Pronounced hypotonia in PWS is a significant risk factor for respiratory illness with severe complications.
In a recently released study by Dr.’s Miller and Thornton, parents of children with PWS were surveyed regarding their experience with Respiratory Syncytial Virus (RSV), a common respiratory illness in early childhood. Of the 220 surveys completed, over a quarter of the children had been infected with RSV in early childhood, and nearly half of those who contracted the virus required hospitalization and often intensive medical support.
The study demonstrates the incidence of RSV and risk the virus presents to the child with PWS. Additionally, it identified that immunization with the vaccine Synergist significantly reduced the incidence of RSV in the children in the study. It was also reported by caregivers in the study that there were barriers to vaccine access, including provider resistance to prescribing it and lack of coverage by insurance. The results of this research provides the clinical evidence needed for providers and families to overcome the barriers that prevent the immunization of children with PWS for RSV.
Contributed by Mary Burr
Study reference info:
Note: The views expressed in this article are those of the author and may not be appropriate for every family.
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.