Food can't be avoided. Yet, with a diagnosis of Prader-Willi syndrome, our relationship to food must shift dramatically. Some may see this as a blessing, an opportunity to learn how to make better food choices. Others may feel the burden instantly. Hopefully, with some adjustments and education, the needed shifts will feel less like a burden and more of a positive lifestyle change.
There are many aspects to the food relationship with PWS. Access to food is, of course, a high priority. Also, the types of food our loved one has access to can significantly affect their quality of life. It's not always an easy transition. Drive-thru meals and rich, sugary desserts are no longer common occurrences. But thankfully, some of our favorite meals can be made a bit more healthy with some adjustments.
Grains
Pastas and breads are an easy one. Swap out bleached white flour products for whole grains and alternatives. Whole grain breads provide a lot more nutrition than white breads. Pastas come in a variety of styles now. You can find whole wheat pasta or various gluten-free pastas made with chickpeas or rice. Healthier, though more time-consuming, options are zucchini noodles or spaghetti squash. Use brown rice instead of white. Bolognaise on brown rice is a surprisingly delicious combination.
Meats
Another way to adjust a recipe is incorporating ground chicken or turkey into meals, but you can also use any good quality meat as a protein source. Turkey bacon may be an alternative option to pork, but as long as it is a good quality meat, choose what works best for your family and loved one. Along with a good quality beef patty, you may also consider a chicken sandwich or gardenburger as additional options.
Sweeteners
If a recipe calls for a sweetener, try honey or maple syrup (depending on the recipe and flavor profile) rather than white sugar. Along those lines, opt for fresh fruit rather than dried fruit. As the fruit dries, the sugar content increases. It's the same with juice. Choose an apple rather than a glass of apple juice. The glass of juice requires the juice from numerous apples, creating a much higher sugar content than one apple. Unsweetened bubbly water with a few frozen strawberries can be a healthy, hydrating treat.
Butter and Oil
When cooking eggs or vegetables in a skillet, use olive oil instead of butter or vegetable oil. A combination of both olive oil and butter can be used. This allows for some of the butter flavor without as much cholesterol. For scrambled eggs, water can be used in place of milk. Some chefs swear by it.
Baked Goods
When baking sweets, it is possible to use 1/4 cup plain Greek yogurt in place of an egg. There are many sugar substitutes, some better than others. Honey, maple syrup, or apple sauce are good alternatives to plain sugar, though the consistency can affect a recipe. Many online recipes offer alternatives in the notes sections.
Breakfast
Greek yogurt with fresh fruit is an alternative to flavored store-bought yogurts with high sugar content. Be sure to add a few nuts for protein. There are many simple homemade granola recipes on the internet. Store-bought granola tends to be highly sweetened. Pancakes can still be a part of the weekends. This Perfect Banana Egg Pancakes recipe makes an excellent substitute for traditional flour pancakes. They are delicious on their own, but especially when you add some almond butter or walnuts and honey.
Start Small
For many, making dietary changes can feel confusing and overwhelming. Allow yourself to start small. It is better to begin with small changes rather than feeling overwhelmed and doing nothing. The intention is to help adjust those recipes you love. Find ways to include healthier, less calorie and sugar-dense options when preparing meals. Try making one or two adjustments and going from there. You may be surprised at what you find works.
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Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย 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 Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs 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 Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.