Question:
Male, 26 years old, deletion subtype
My son has struggled with severe behavioral outbursts now at a rate of about 3-4 times a year, where bystanders will call police and he will either be arrested or brought to psych eval. Always calms down, is sent home. Had been on risperidone at increasing amounts as he grew. At one point, psych added a timed-release clonidine, then after a severe issue earlier this year, we switched the clonidine to guanfacine. The switch has not helped. When he is keeping a secret (about something he did that he shouldn’t have) or at holiday times or at both, he is at severe risk of a meltdown like this. He is big and someone could get hurt. Current does of risperidone is 1mg am and 1mg pm and guanfacine 1mg evening. Also takes NAC 1000 evening. Should we drop guan and add tiny dose of sertraline? How do we get a med consultation for him for his psychiatrist who is not a PWS expert?
Nurse Lynn’s Response:
When your son has big behavioral meltdowns a few times a year, especially around holidays, changes in routine, or when he is worried about getting in trouble, experts recognize this as part of how PWS affects the brain. People with PWS often have a much harder time handling stress, change, and strong emotions. When stress builds up, their brain can become overwhelmed, and a sudden outburst can happen. These episodes are not planned or done on purpose, and most people calm down afterward and return to their usual self, just like you described with your son.
Medicines like risperidone can be helpful for everyday irritability, but they do not always prevent these stress-related meltdowns. Medicines such as clonidine or guanfacine may help some people feel calmer, but for others with PWS, they are not enough during high-stress times. Medicines for anxiety or mood, like sertraline, can help some individuals with PWS when anxiety and emotional overload are major triggers. However, these medicines must be started at very low doses and increased slowly, because starting too high or moving too fast can make behavior worse instead of better.
Medication is only one part of the plan. Working with a therapist who understands PWS is also very important. Therapy can help your son learn and practice coping skills for stress, such as how to calm his body, ask for help, or take a break before things get too big. Therapy can also help him prepare for known stress times, like holidays or schedule changes, by talking about what is coming, making a clear plan, and practicing coping strategies ahead of time. Practicing these skills before stressful events gives the brain a better chance to use them when stress starts to build.
Medication changes should never be made without help from someone who understands PWS. Your son’s pattern shows that he needs a PWS-informed mental health plan, not just emergency care after things escalate. This means working closely with his psychiatrist, therapist, and support team, and having a written crisis plan that explains his triggers, early warning signs, and what helps him calm down, so police or emergency rooms are not the first option whenever possible.
At PWSA | USA we offer a peer-to-peer consultation service. Through this service, I can help connect your son’s treating psychiatrist or psychologist with one of our PWS experts.
Do you have a question for Nurse Lynn? Submit your question here:
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.
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.
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.
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.
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.