Max, a 6-month-old infant, has recently had a gastrostomy tube placed after receiving breast milk via NG tube due to significant hypotonia. His length is <5th percentile, weight is at 5th percentile, and weight-for-length is 50th percentile.
Maddie is 4 years old and participates in Head Start. Her parents report that she asks for food between meals and regular snacks, and will often have tantrums if denied. The Head Start meals are served family style, but Maddie’s parents would like to have more control over her intake. Her BMI has gone from the 75th to the 95th percentile in the past 6 months.
All of these children have Prader-Willi syndrome (PWS). Their nutrient needs will depend on their age, stage of development, medical complications, and motor/activity level. Each individual will manifest the characteristics of the syndrome differently, so the “typical” does not always apply to the individual. Each family is unique in their strengths, management style, and the education and support needed. The role of the Registered Dietitian Nutritionist (RDN) is to work with the family to ensure optimal nutrition and weight management, provide anticipatory guidance, and communicate with the health care team and educators.
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Prader-Willi Syndrome – Nutrition Update
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