Question:
Male, 4 years old, unknown subtype
What if the growth hormone levels are high? Does my son still need to be on growth hormone?
Nurse Lynn’s Response:
Growth hormone therapy is a cornerstone of treatment for individuals with PWS. It helps promote growth, improve body composition, enhance muscle tone, and support overall metabolic and cognitive functions, and other challenges common in PWS.
If your son’s IGF-1 levels are elevated, it doesn’t necessarily mean GH therapy should be stopped. Elevated IGF-1 levels often indicate that the GH dose may be too high, potentially increasing the risk of side effects like glucose intolerance, joint problems, or worsening sleep apnea. However, rather than discontinuing therapy, the endocrinologist will likely adjust the dosage to find the optimal balance.
Monitoring of IGF-1 levels, growth velocity, and body composition is crucial, as these measurements help tailor GH therapy to suit your son’s specific needs. The endocrinologist may also consider family height patterns and other individual factors to ensure that the therapy is effective and safe.
Regular follow-up assessments will guide adjustments to the GH dose, ensuring that your son continues to benefit from the therapy without risking side effects.
Additionally, I recommend reaching out to the International Prader-Willi Syndrome Organization (IPWSO). They offer an ‘Ask a Professional’ service, where your questions are reviewed by experts, including members of their Clinical and Scientific Board. They often have local contacts and can assist with both medical inquiries and advocacy for your child: Ask a Professional – IPWSO
Resources:
Growth-Hormone-booklet-third-Edition_FINAL.pdf
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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.