Question:
Female, 58 years old, UPD subtype
This woman is experiencing some behavior issues recently, arguing, aggressiveness, excessive skin picking, and hallucinations. A doctor at University of Louisville Hospital, where she was seen yesterday, has suggested some possible meds for her psyche doctor to consider. The meds are loxapine, clozapine, and depskote. She has a TeleHealth appointment with her psyche doctor tomorrow. Do you have any suggestions?
Nurse Lynn’s response:
Thank you for reaching out and for advocating for this individual. I want to start by saying that I am not a physician or prescriber, so I cannot recommend specific medications. However, I can share some information and suggest questions that may help guide your conversation with her psychiatrist during the upcoming Telehealth appointment.
The behaviors you describe arguing, increased aggression, excessive skin picking, and hallucinations, are important symptoms to evaluate carefully in someone with PWS. Behavioral changes like these can sometimes signal an underlying psychiatric condition, but they can also be triggered by environmental stress, medication effects, medical illness, or disruptions in routine. In PWS, stress sensitivity is very high, and changes in environment, expectations, staffing, or daily structure can significantly affect behavior.
It is also important to remember that individuals with PWS may experience psychosis or mood disorders, sometimes related to an underlying mood cycling disorder. Hallucinations or significant behavioral shifts should always be taken seriously and evaluated thoroughly.
The medications you mentioned—loxapine, clozapine, and Depakote (valproate)—are medications that psychiatrists sometimes use for mood stabilization or psychosis. In PWS, medications can be helpful when a true psychiatric disorder is present, but experts recommend a “start low and go slow” approach because individuals with PWS may experience side effects at lower doses than typical patients.
Before deciding on medication changes, gathering additional information can be very helpful. If possible, consider discussing the following with the psychiatrist:
*Have there been any recent changes in routine, staffing, living situation, or stressors that could be contributing to these behaviors?
*Is there consistent food security in the home or residential environment? Lack of food security or uncertainty around meals can significantly increase anxiety and behavioral dysregulation in PWS.
*What other medications or supplements is she currently taking, including over-the-counter products? Drug interactions can sometimes worsen psychiatric symptoms.
*Has she had recent medical screening (infection, pain, constipation, sleep issues, medication side effects)? Medical problems may present as behavioral changes in PWS.
*What is her past psychiatric medication history? Which medications helped, which caused side effects, and why were they stopped?
*Are the hallucinations new, and how often are they occurring? Are they associated with sleep deprivation, stress, or mood changes?
*Are there behavioral or environmental strategies already in place (structured schedule, behavioral supports, supervision, incentives, sensory activities)? Environmental and behavioral strategies are considered the foundation of treatment in PWS.
Resources:
The upcoming appointment is a good opportunity to review the full clinical picture: behavioral patterns, environmental factors, medical issues, and medication history, before making medication changes. Please see the links below that can provide further guidance.
Psychiatric-information-for-psychiatrists-_C-2018.pdf
Psychotropic-med-tip-sheet-2022.pdf
Mental-Health-and-Behavior-Changes.pdf
https://www.fpwr.org/pws-mental-health-guidebook
The-Mental-Health-of-People-with-PWS-T-Holland.pdf
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.