Question:
Male, 2.5 years old, deletion subtype
What are the implications for low cortisol levels in toddler boys with deletion subtype (type 2)? We’ve noticed some more fatigue and he sleeps longer during the night. What can and should be done about it? Our pediatrician ran a blood panel and cortisol came back at 3.7 ug/dL.
Nurse Lynn’s Response:
Cortisol is a hormone that helps the body handle stress, illness, and everyday energy needs. A level of 3.7 µg/dL can sound low, but one single cortisol test does not tell us if your child truly has a problem. Cortisol levels change throughout the day, they are highest early in the morning and lowest at night, so the number only helps us if we know exactly what time the blood was drawn. Kids with PWS can also sleep longer or seem tired for many reasons that are not related to cortisol.
If cortisol really is low, a child may seem more tired, sleep longer, get worn out easily, or have more trouble handling illness. But these symptoms can also happen in PWS for other reasons, which is why careful testing is important. The next step is usually to repeat the cortisol test early in the morning, between 6–8 AM, when levels should naturally be highest. Your doctor may also check ACTH, another hormone that tells the adrenal glands what to do. If the morning level still looks low, the endocrinologist may recommend something called a stimulation test, which checks if the adrenal glands can make more cortisol when needed.
If a child truly has low cortisol, the treatment is simple and safe: most often with a medication called hydrocortisone.
Resources:
https://www.pwsausa.org/wp-content/uploads/2023/01/Central-Adrenal-Insufficiency.pdf
https://www.youtube.com/watch?v=iX8TM1AQUTE (at approx. 11:23 minute mark)
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.