Maintaining Goal Weight

Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the first agency because of safety reasons and we moved him into another community living arrangement, another agency, with one other young man who is not PWS. Food is locked up but he can’t maintain 135 pounds. He’s extremely active. He has a treadmill in his room and he walks 30-60 minutes per day, he does Zumba classes 4 times per week, he takes dance class 4 times per week. How concerned should we be that his staff can’t seem to maintain his goal weight? Thank you!

Nurse Lynn’s Response: Thank you for your question. I am happy to hear that your son is so active! A BMI of 25 is generally considered normal for adults with PWS. You mention that the food is locked up. Does he have a meal plan that he follows? I always say that the scale doesn’t lie. This means that the scale will tell you if he is getting more food than is in his meal plan (which is followed religiously by staff). Many providers weigh individuals at least 2-3 times weekly. It can be tricky to have both PWS and non-PWS individuals living together. At PWSA|USA, we have resources to look at meal plans and provide training to residential providers. I would be concerned if that weight keeps creeping up. People outside of the normal BMI are at risk for complications of obesity like type 2 diabetes, sleep apnea, heart disease, etc.

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