The First Two Years with PWS: Expert Guidance for Families

The early years with Prader-Willi syndrome (PWS) come with a lot to learn. For families still finding their footing after a new diagnosis, questions about feeding, growth hormone, sleep, therapies, and specialist visits can come quickly — all while getting to know your baby and what works best for your family.

During a recent Parent Connect session, Dr. Sani Roy, Dr. Keisha Shaheed, and clinical therapist Corrie Andrews from the Cook Children’s Multidisciplinary Prader-Willi Wellness, Education, and Research Center (MPoWER Center) shared practical guidance for families navigating these early years.

Feeding in Infancy

Dr. Roy discussed feeding in infants with PWS, including how low muscle tone can affect a baby’s ability to coordinate sucking, swallowing, and breathing. Some babies may need supplemental feeding through an NG or G-tube while they build strength and feeding skills.

Feeding progress looks different for every baby. Some babies need feeding support for a relatively short time, while others need it longer. Dr. Roy encouraged families to work closely with their medical and feeding teams and remember that progress may look different for every child.

Growth Hormone and Early Development

Dr. Roy also discussed growth hormone and other hormone considerations. For children with PWS, growth hormone treatment is about much more than height. It can support muscle development, muscle tone, and healthier body composition.

Starting daily injections can understandably feel like a big step for parents. Dr. Roy explained what families can expect from treatment and monitoring, and emphasized the role of the medical team in following each child closely.

Sleep and Breathing

Sleep and breathing are another important part of early PWS care. Babies with PWS may experience obstructive or central sleep apnea, and sleep studies can give doctors important information about what is happening while a child sleeps.

Dr. Shaheed explained that sleep and breathing needs can change as children grow and as treatments such as growth hormone are introduced. Regular monitoring helps families and clinicians make decisions based on the individual child rather than a one-size-fits-all approach.

Supporting Parents, Too

The conversation also acknowledged something that can be easy to overlook: parents are learning and adjusting, too.

Corrie Andrews talked about the emotional side of caring for a baby with PWS and the mix of emotions parents may experience after diagnosis. Her advice was practical: lower the expectations that do not matter right now, accept help when it is offered, and focus on what your family needs today.

Over time, appointments become more familiar. Routines take shape. Parents learn their child’s cues, their care team, and the questions they want to ask. The things that once felt completely unfamiliar often become part of everyday life.

Continuing the Conversation at Conference

This October, Dr. Roy will continue the conversation at the FPWR Family Conference, taking a deeper look at medical care during infancy and early childhood with PWS.

Families will have the opportunity to learn more about the medical considerations that can arise during these early years, understand the reasoning behind common treatments and recommendations, and hear practical guidance from a physician with extensive experience caring for children with PWS.

We’re excited to welcome Dr. Roy and give families the opportunity to ask questions, learn, and leave with a better understanding of their child’s care.

With thanks to Dr. Sani Roy, Dr. Keisha Shaheed, and Corrie Andrews of Cook Children’s MPoWER Center for sharing their time, expertise, and guidance with families navigating the early years of PWS.