Question:
Female, 12 years old, unknown deletion
My daughter has been getting a temperature on and off during the day and night, but otherwise she seems fine. Could this be an issue with regulating her body temperature? If so, how is something like this treated, and what type of doctor should we see?
Nurse Lynn’s Response:
Temperature changes, both higher and lower, can happen more often in individuals with Prader-Willi syndrome because the hypothalamus, the part of the brain that regulates temperature, doesn’t always work in a typical way. This can cause intermittent fevers, swings in body temperature, or times when a child feels warm or flushed even though they appear well. So yes, temperature-regulation difficulties can occur in PWS.
However, before assuming this is related to hypothalamic dysfunction, it’s important to rule out more common causes first. Children with PWS often don’t show the usual signs of pain or illness, so even if she looks fine, there may still be an underlying issue.
If this does turn out to be related to temperature regulation, treatment focuses on environmental management rather than medications. Helpful strategies include avoiding overdressing, keeping room temperatures steady, encouraging regular hydration, and tracking when temperature shifts occur to identify patterns.
I would start with your pediatrician. They can check for infections or other common causes. If everything looks normal but the temperature swings keep happening, the next step would be to speak with her endocrinologist, who understands how the hypothalamus and hormones affect temperature.
Resource:
https://www.pwsausa.org/resources/medical-issues-a-z/
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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.