Question:
Male, 43 years old, Deletion subtype
Our 43-year-old PWS son has become addicted to nicotine which has become more important than food. He knows he will be fed but we restrict his access to vaping (his favorite) which leads him to all kinds of ways of getting it out of our control. So far, no medications (acamprosate, naltrexone, Nicoret) or psychological treatments have helped.
Any suggestions? (Acupuncture, hypnosis?)
Please advise. Thank you.
Nurse Lynn’s Response:
Nicotine addiction in adults with PWS can be particularly difficult to manage due to the syndrome’s underlying neurobiology. The same hypothalamic and reward-system differences that drive persistent food-seeking behaviors in PWS can also heighten the desire for other reinforcing substances, such as nicotine. Traditional treatment approaches may be less effective, as pharmacologic options like nicotine replacement therapy, naltrexone, or acamprosate often have limited impact if the underlying compulsive and repetitive drive remains strong. While access control strategies tend to work better than moderation in PWS, nicotine’s portability and widespread availability make enforcement challenging.
In such cases, strict environmental control often provides the most effective harm-reduction strategy, like food security measures used in PWS care. This may include lockable storage for money and valuables to prevent purchases, limiting unsupervised time in settings where nicotine is accessible, and blocking online purchasing routes through parental controls or purchase alerts. Some individuals may also benefit from replacement behaviors, such as non-food oral stimulation with chewing gum or flavored toothpicks, though success varies. Additionally, alternative therapies like acupuncture or hypnosis can be explored, but current evidence for their effectiveness in smoking/vaping cessation is mixed.
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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.