National Nutrition Month – March 2020
By: Stacy Ward, Director of Family/Medical Support & Special Projects
March is National Nutrition Month. A month when the Academy of Nutrition and Dietetics encourages people to focus on making informed nutrition decisions, and good eating and physical activity habits. Parents and families of loved ones diagnosed with Prader-Willi syndrome have an array of concerns as their children transition from infants to children then adults. One of the greatest struggles and worries for families is adequate nutrition and healthy living. PWSA (USA)’s Family and Medical Support counselors receive hundreds of calls per year from parents, physicians and professional providers seeking advice on this very topic.
From birth, parents are faced with learning the unique abilities and challenges their newborn is experiencing. The focus initially is on ensuring the baby is adequate nutrition to grow and develop; for many this means tube feeding. Typically, after the first year of coaxing and encouraging their children to eat, parents find their need to coax and encourage waning and their child begins to enjoy eating.
During the toddler years, feeding skills improve, and table foods and cups replace baby food and bottles. This is the time to establish healthy living and good nutritional habits-as a family! There is no one PWS diet, all children are different and have different nutritional needs, including children with PWS. Work closely with your team of experts; endocrinologist, registered dietitian, speech and language pathologist, occupational therapist and physical therapist, to develop the most appropriate nutritional plan for your child.
PWSA (USA) has published three nutritional guideline booklets: Infants and Toddlers, Toddlers through Adolescences and Adolescence through Adult. These booklets are intended as guidelines and should not replace the recommendations of your child’s medical team.