Question:
Male, 8 months old, unknown subtype
We want to give hCG injections to our son, not just to avoid the surgery but for future benefits as well. His endocrinologist and urologist refused to give hCG, even after requesting so many times. I’m from the UK, and the NHS (National Health Service) have stopped giving hCG. Can you please guide me in understanding the benefits and how to get the prescription?
Nurse Lynn’s Response:
hCG is administered to male infants with Prader-Willi Syndrome (PWS) under 6 months of age to support the normal mini-puberty process. This treatment helps the testes produce their own testosterone, which can improve the size of the scrotal sac and penis and may assist in the descent of the testes in approximately 30% of individuals. Additionally, the increased size of the scrotal sac can facilitate the success of orchiopexy surgery by providing enough space for the testes to be properly positioned.
Resources:
We encourage you to visit the IPWSO “Ask a Professional” webpage to see if they can help you further. Ask a Professional – IPWSO
Do you have a non-emergency medical question for Nurse Lynn? Submit your question here:
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.