dŚŝƐĞͲŬǁĂƐĐƌĞĂƚĞĚƚŽŚĞůƉƉĂƌĞŶƚƐ͕ŐƌĂŶĚƉĂƌĞŶƚƐĂŶĚŽƚŚĞƌƐƌĂŝƐŝŶŐĐŚŝůĚƌĞŶǁŝƚŚ
          WƌĂĚĞƌͲtŝůůŝƐLJŶĚƌŽŵĞ;Wt^Ϳ͘dŚĞƌĞŝƐŶŽƚĂŽŶĞƐŝnjĞĨŝƚƐĂůůƐŽůƵƚŝŽŶƚŽďĞŚĂǀŝŽƌŽƌĞĂƚŝŶŐ
          ƉƌŽďůĞŵƐ͕ďƵƚƚŚĞƌĞĂƌĞƐƚLJůĞƐƚŚĂƚƐĞĞŵƚŽǁŽƌŬďĞƚƚĞƌƚŚĂŶŽƚŚĞƌƐǁŝƚŚĐŚŝůĚƌĞŶǁŚŽŚĂǀĞ
          ƚŚŝƐƐLJŶĚƌŽŵĞ͘
          The sections are broken down into: 
            x Food Control
            x Behavior Management
            x Family
            x School Information (Basics)
            x Medical
            x Miscellaneous
          /ĨLJŽƵĂƌĞĂďůĞƚŽƐƚĂƌƚƐŽŵĞŽĨƚŚĞƐĞƐƚƌĂƚĞŐŝĞƐĞĂƌůLJ͕ŝƚǁŝůůďĞĞĂƐŝĞƌ͘/ĨLJŽƵĂƌĞƐƚĂƌƚŝŶŐůĂƚĞƌ͕ŝƚ
          ŵĂLJƚĂŬĞƐŽŵĞƚŝŵĞƚŽƐĞĞƌĞƐƵůƚƐ͘ZĞŵĞŵďĞƌ͕ŝĨLJŽƵĂƌĞƚƌLJŝŶŐƚŽĞƐƚĂďůŝƐŚŶĞǁďŽƵŶĚĂƌŝĞƐ͕
          ĐŚŝůĚƌĞŶǁŝůůŽĨƚĞŶǁŽƌŬĂƚŐĞƚƚŝŶŐLJŽƵƚŽŐŽďĂĐŬƚŽƚŚĞŽůĚ͞ŶŽƌŵĂů͟ǁĂLJƐ͕ƐŽďĞƉĂƚŝĞŶƚĂŶĚ
          ƚƌLJƚŽůŽŽŬůŽŶŐƚĞƌŵ͘/ƚŝƐĞĂƐŝĞƌƚŽĞƐƚĂďůŝƐŚďŽƵŶĚĂƌŝĞƐŝŶƚŚĞďĞŐŝŶŶŝŶŐŝĨLJŽƵĐĂŶ͘
          dŚĞ ĂƌƚŝĐůĞƐ ƐĞůĞĐƚĞĚ ĂƌĞ ŽŶĞ ĂŶĚ ƚǁŽ ƉĂŐĞ ŚĂŶĚŽƵƚƐ ƚŚĂƚ ǁŝůů ŚŽƉĞĨƵůůLJ ƉƌŽǀŝĚĞ ƉƌĂĐƚŝĐĂů
          ƐƚƌĂƚĞŐŝĞƐ͘ DŽƐƚ ŽĨ ƚŚĞ ƐƵŐŐĞƐƚŝŽŶƐ ŽŶ ďĞŚĂǀŝŽƌ ĐĂŶ ďĞ ĂƉƉůŝĞĚ ƚŽ Ăůů ĐŚŝůĚƌĞŶ͕ ĞǀĞŶ ƚŚŽƐĞ
          ǁŝƚŚŽƵƚĂĚŝƐĂďŝůŝƚLJ͕ƚŽŚĞůƉƌĞŝŶĨŽƌĐĞƉŽƐŝƚŝǀĞďĞŚĂǀŝŽƌ͘
          dŚĞƌĞŝƐĂŶĞdžĞƌĐŝƐĞsŝŶĐůƵĚĞĚĂŶĚŝƚŝƐĂŐƌĞĂƚǁĂLJƚŽƐƚĂƌƚŵĂŬŝŶŐĞdžĞƌĐŝƐĞĂĨƵŶĂŶĚ
          ƌŽƵƚŝŶĞĂĐƚŝǀŝƚLJ͘ŚĞĐŬǁŝƚŚLJŽƵƌĚŽĐƚŽƌƚŽŵĂŬĞƐƵƌĞŝƚŝƐĂůƌŝŐŚƚĨŽƌLJŽƵƌĐŚŝůĚƚŽĞŶŐĂŐĞŝŶƚŚŝƐ
          ĂĐƚŝǀŝƚLJ͘/ĨLJŽƵƌĐŚŝůĚŝƐŚĞĂǀLJ͕LJŽƵŵĂLJǁĂŶƚƚŽƐƚĂƌƚĞdžĞƌĐŝƐĞŝŶĂƉŽŽů͘dŚĞLJĚŽŶŽƚŚĂǀĞƚŽ
          Ɛǁŝŵ͕ũƵƐƚƐƚĂƌƚďLJŵŽǀŝŶŐĂƌŽƵŶĚŝŶƚŚĞǁĂƚĞƌ͘
          /ĨLJŽƵŚĂǀĞĂŶLJƋƵĞƐƚŝŽŶƐĂďŽƵƚƚŚŝƐͲŽŽŬŽƌǁŽƵůĚůŝŬĞŵŽƌĞŝŶĨŽƌŵĂƚŝŽŶ͕ƉůĞĂƐĞĨĞĞůĨƌĞĞƚŽ
          ĐŽŶƚĂĐƚWt^;h^ͿĂƚ;ϴϬϬͿϵϮϲͲϰϳϵϳĂŶĚĂƐŬĨŽƌĂĨĂŵŝůLJƐƵƉƉŽƌƚĐŽƵŶƐĞůŽƌ͘
                  ŽƉLJƌŝŐŚƚΞϮϬϭϯďLJƚŚĞWƌĂĚĞƌͲtŝůůŝ^LJŶĚƌŽŵĞƐƐŽĐŝĂƚŝŽŶ;h^Ϳ
            ůůƌŝŐŚƚƐƌĞƐĞƌǀĞĚ͘EŽƉĂƌƚŽĨƚŚŝƐƌĞƐŽƵƌĐĞŵĂLJďĞƌĞƉƌŽĚƵĐĞĚŝŶĂŶLJĨŽƌŵŽƌďLJĂŶLJ
          ĞůĞĐƚƌŽŶŝĐŽƌŵĞĐŚĂŶŝĐĂůŵĞĂŶƐ͕ŝŶĐůƵĚŝŶŐ͕ďƵƚŶŽƚůŝŵŝƚĞĚƚŽ͕ƐƚŽƌĂŐĞĂŶĚƌĞƚƌŝĞǀĂůƐLJƐƚĞŵƐ͕
                        ǁŝƚŚŽƵƚƉĞƌŵŝƐƐŝŽŶŝŶǁƌŝƚŝŶŐĨƌŽŵWt^;h^Ϳ͘
           Prader-Willi Syndrome Association (USA) 8588 Potter Park Drive, Suite 500 Sarasota, FL 34238 800.926.4797 www.pwsausa.org
                                                    Index 
                 1. Food Control
                       x   Introduction to food control and planning
                       x   A Parents Perspective (food issues)
                       x   Obesity still kills
                       x   Beyond the diet for parents
                       x   Understanding the principles of food security
                       x   Food security check list (family & school)
                       x   Helping with diet ŵanagement
                       x   Weight behavior management
                       x   More on food security
                       x   Information on locks
                       x   General tips for food control
                       x   Food list for refrigerator
                       x   Food pyramid
                       x   Brown bag lunches
                       x   1000 calorie menu (3 weeks)
                       x   Exercise
                 2. Behavior Management
                       x   How does a person with PWS think͍
                       x   A parents perspective (behavior)
                       x   Communication breakdown
                       x   Information for behavior management
                       x   Tips for creating a positive behavior support plan
                       x   More information on positive behavior
                       x   Behavior strategies & communication
                       x   Stress ƚriggers and how to manage them
                       x   Sleep & behavior
                       x   Bed wetting
                 3. Family
                       x   Building strong families
                       x   KƵƌŚĞĂůƚŚLJƐŝďůŝŶŐƐ
                 4. School Information
                       x   Information for school staff about behavior
                       x   Food is never okay in the classroom
                       x   Key components for success
                       x   Food security in the educational environment
                       x   Food behavior in school-sample for IEP
                       x   Don’t stop speech therapy
                       x   Therapies-brochure
                       x   Quick tips for school
                       x   What you need to know about IDEA
                 5. Medical
                       x Introduction
                       x   PWS Guide 2005
                       x   Obesity still kills
                       x   Dental information
                       x   Skin picking
                       x   Rectal picking
                       x   Gastroparesis
                       x   Sensory integration
                       x   Psych unit weight gain
                       x   Anesthesia & PWS
                       x   Anesthesia Đoncerns for Ɖatients
                       x   Postoperative ŵonitoring Őuidelines
                       x   GH Booklet
                 6. Miscellaneous
                       x   Health concerns for camp
                       x   Summer camp article
                       x   Services
                                FOOD CONTROL 
          This section will help with controlling your child’s food ƚŽĂƐƐŝƐƚ with weight control.  If your child is older
          and you are starting a menu plan, be patient, it will take time and there may be more behaviors until 
          they are certain you are going to stick with the new food plan and that food is not accessible.  
           If you are already working to control the food, you may find that your child really likes the new plan. The 
          foods they will be eating are lower in calories and they can have more variety.  Start with the 1000 calorie 
          menu and then go from there.  Some people who have PWS use an 800 calorie meal plan to lose and 
          maintain weight, some it’s 1200 calories, so weigh your child weekly and see what works for them. 
          Families and therapistƐ often mistakenly believe the person with PWS cannot be happy unless they have
          as much food as they demand.  If food security is in place, their anxiety will go down and in the long run 
          there will be a decrease in stress and behavior problems surrounding food. 
          Remember When Food Security is fully implemented; weight and behavior are both managed 
          successfully and simultaneously. 
          If you need more help with food control or a food plan or you have any questions about this section call 
          Wt^;h^ͿĂƚ (800) 926-4797.
          Kate Beaver, MSW, CSW 
          Family Support/Crisis Counselor 
          PWSA-USA 
          Prader-Willi Syndrome Association (USA) 8588 Potter Park Drive, Suite 500͕Sarasota, FL 34238 800.926.4797 www.pwsausa.org