Question:
Male, 5 weeks old, Deletion
Our baby was diagnosed with Prader-Willi Syndrome at 3 weeks old. He is 5 weeks old, in the NICU. My family has been reading about how important growth hormone treatment is. We want to get our baby started on it but not sure if he is too little. Should we be starting that now? How do we even do that?
Nurse Lynn’s Response:
Congratulations on the birth of your precious baby! While receiving a diagnosis of Prader-Willi Syndrome can feel overwhelming, it’s important to know there is an abundance of support and care available to help you and your child thrive. Your love and dedication will have a profound impact on their well-being.
Growth hormone therapy is one of the treatments that can provide significant benefits for children with PWS. However, it does not need to begin immediately in the NICU. Oftentimes, families are not able to bring home the medication if they start in the NICU and they will have to stop the medication until they can establish care with a pediatric endocrinologist who will continue to prescribe the medication and oversee the necessary lab testing. Hospital care coordinators can often assist in scheduling your first appointment with a specialist before your baby goes home.
Starting growth hormone therapy around 4-6 months is common, but initiating treatment before one year of age is considered most beneficial. There have not been studies that show significant advantages to starting earlier than this timeframe. Remember, a slight delay in starting therapy won’t compromise your baby’s long-term outcomes.
You’re not alone in this journey, and there are many resources and professionals available to support you and your family. Your care and advocacy are the most important factors in your baby’s well-being.
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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.