Hi, this is a difficult one to respond to. My brother with PW just died in August. He was 49. The best diet we finally found for him (think--49 yrs!) after much trial and error is the diabetic diet that measures carbs. Gives many more choices of food than a calorie count one does. Easier to eat in public, easier for staff or anyone in charge to read and convert (people guess calories) A year brought down 40 lb. This is managable. And you can get a dietician to set you up and follow the progress. Alan had monthly sessions with the dietician. As if life as a PW wasn't enough, PWs will get any disease the rest of us get. Because of the diet-or lack there of--diabetes is the major one. Cardio-vascular deaths are the most common. And we all know the stats for those of us in control of our diets those are so important. Most will die of a heart attack. I have done so much research on PW over the last couple years, but esp this summer. Alan went in for a carb adjustment, blood work, which led to a Chest Xray, and the next day CT--lung, lymph nodes, liver and colon cancer. And he had no pain. There was no signs. PWs lack the pain receptors in the brain. The good Lord made sure the pain was absent for the next 7 weeks as we entered hospice, lived at his group home, and peacefully left this earth. But as my faith leads me, I know that Alan is a perfect person in heaven. No more PW, or anything else!
So many kinds of information to try. What is the age of your PW? Alan's big sister, Joyce jnokleby AT info-link.net
RE: Recipes for Someone with Prader-Willi Syndrome
By Lisa (Guest Post)
There is a great book of recipes written specifically for persons with PWS. It is published by Prader-Willi Syndrome Association (USA) and is available for purchase from them by calling 800-926-4797. The website is www.pwsausa.org. Happy Cooking!
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