There is no single, correct way of feeding a person who has Prader-Willi syndrome – different approaches can work for different individuals and families. However, there are several key elements that should be part of any dietary management plan for PWS.
Macronutrients Matter
In the past, most families were instructed to follow a low calorie, low fat diet. While calorie control remains important, in recent years the focus has turned to the macronutrient (protein, carbohydrate, fat) balance in the diet. It is now recommended to reduce or eliminate sugar intake and focus on good quality protein, vegetables, and to include some good fats in the diet. Read food nutrition labels rather than just calorie content and check packaging claims, i.e. ‘no added sugar’ does not mean no natural sugars and ‘low fat’ foods may contain added sugars or sweeteners. As more is now known about the effects of sweet foods on the brain and the increased risk for insulin resistance in PWS, it is recommended that traditional ‘diet’ foods, which are still sweet, should be avoided. It is also easier to monitor macronutrient intake by sticking to simple foods rather than those with a large number of ingredients.
In 2013, Dr Jennifer Miller and her team at the University of Florida published a study that compared a group of children on a calorie controlled diet vs children on a calorie controlled diet that was lower in carbohydrates. They found that children who followed the lower carbohydrate diet weighed less and had less body fat. The recommended diet was:
45% carbohydrate, 30% fat and 25% protein, with at least 20g of fibre per day. This is similar to the Mediterranean Diet advocated by expert dietitian, Melanie Silverman, which was recently successfully trialled at Latham Centers in the USA.
The relative proportions of foods in these diets can be visually represented by the Prader-Willi plate graphic from dietitian Melanie Silverman, and the Prader-Willi food pyramid proposed by Dr Linda Gourash from the Pittsburgh Partnershipwhich places additional focus on gut health by proposing the inclusion of fermented foods. (Note that the red foods in the pyramid are not recommended and should be avoided where possible.)
