Question:
Female, 5 months old, UPD subtype
We are looking for guidance on supplements for infants with Prader-Willi syndrome, particularly for brain development.
Our daughter is 5 months, and we are beginning conversations about whether supplements may be appropriate for her at this stage. We understand that Dr. Miller has published general supplement recommendations for individuals with PWS, but we are unsure how these recommendations translate specifically to infants, including:
• Which supplements are typically considered in infancy
• Appropriate dosing ranges for infants
• Preferred or commonly used brands among PWS families
• Which supplements are usually introduced first versus later in childhood
Thank you for all you do to support the PWS community!
Nurse Lynn’s Response:
When families begin asking about supplements for infants with PWS, especially for brain development, it helps to think in layers. The first layer is making sure your baby is receiving what all infants need for healthy growth and development. The second layer is understanding that some supplements are commonly discussed in the PWS community, often based on clinical experience rather than strong research evidence, and these are usually introduced thoughtfully and gradually, most often later in childhood rather than during infancy.
At 5 months of age, supplement decisions should be cautious, individualized, and always made in partnership with your pediatrician and, when possible, a PWS specialty clinic. Because infants with PWS can be more sensitive to medications and supplements, it is especially important to avoid high doses and to remember that “natural” does not always mean safe. Before starting any supplement, families should talk with their healthcare team about why a supplement is being considered, whether it is appropriate at this age, the correct dose and formulation for an infant, how benefits or side effects will be monitored, and when to stop if there is no clear benefit. In infancy, less is often more, and thoughtful, team-based decision-making is key.
- *Vitamin D: Supports bone health and immune function. Most breastfed or partially breastfed infants are recommended to receive 400 IU per day.
- *Iron: Important for brain development and healthy red blood cells. Often recommended for breastfed infants starting around 4 months, with weight-based dosing guided by the pediatrician.
- *DHA / Omega-3 (fish oil): Supports brain and visual development. Some experts discuss omega-3s because individuals with PWS may have lower intake of essential fats over time, though use in infancy is individualized.
- *L-carnitine: Involved in energy metabolism and sometimes used in PWS to support muscle tone or stamina. Not routinely used in all infants and requires medical supervision.
- *Coenzyme Q10 (CoQ10): Supports cellular energy production. More commonly discussed later in childhood than in infancy.
- *Vitamin B12: Supports nerve and brain function. High-dose B12 is not recommended in infancy unless a deficiency is identified.
- *MCT oil: Sometimes discussed for energy support in PWS. Use in infants is highly individualized and not routine.
- *Probiotics / prebiotics: May support gut health in some infants, but evidence specific to PWS is limited.
- *N-acetylcysteine (NAC): Primarily studied for skin-picking behaviors in older children and adults; not typically used in infancy.
Resources:
Dr Jennifer Miller Presentation – Supplements & Children With PWS – YouTube
Standards of Care for Children Ages 0-2 With PWS [2021 CONFERENCE VIDEO]
Supplements – Prader-Willi Syndrome Association NZ
https://www.pwsausa.org/wp-content/uploads/2023/01/Coenzyme-Q10-Supplements.pdf
Resources: Medical Issues A-Z – Prader-Willi Syndrome Association | USA
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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.