Question:
Male, 41, Deletion
Our son is getting a new housemate, male, age 43, also has PWS. He’s getting testosterone injections biweekly. No doctor has ever suggested that to us for our son. What are the benefits and what are the concerns of testosterone injections in adult male PWS individuals? Thank you!
Nurse Lynn’s Response
Hello,
Individuals with PWS have hypogonadism. Hypogonadism can be a result of hypothalamic dysfunction and/or primary gonadal failure. Many males with PWS have low levels of testosterone. A blood draw is done to check these levels. Testosterone deficiency is essential to bone health, muscle weakness, and fatigue. Replacing the testosterone with an injection, topical gel, or patch may help these things. The biggest concern is the potential for increased aggression.
Following up with your endocrinologist or primary physician is recommended to have these labs routinely drawn.
I have attached a link to an article addressing your questions.
Resource:
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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.