PWCF wishes you and your loved ones a wonderful Thanksgiving celebration! To help keep things safe, share the Safety Tips & Techniques for the Holidays handout with everyone with whom you’re celebrating.
If your loved one is coming home from residential care, please review PWSA (USA)’s Going Home for the Holidays for some life-saving strategies.
Remember to “Paint the Picture” for your loved one with PWS about what will happen throughout the day. Let them know your Food Security plan: what and how much food they will have, who will help serve them, how their supervision will occur throughout the day, etc. Assign specific persons in shifts to supervise your loved one so they do not gain access to unauthorized food. As PWS specialist Linda Gourash, M.D. reminds us, “When everyone is watching, no one is watching.” All of this preparation helps reduce anxiety and disappointment, which reduces the potential for unwanted behaviors!
Despite our best supervision efforts, PWS can sometimes drive our loved one to successfully obtain unauthorized extra food. Remember, if extra food was obtained, it’s not your loved one’s fault! Tighten up supervision and monitor for symptoms. Monitoring for symptoms is especially critical if your loved one has always maintained a healthy weight.
If your loved one complains of symptoms such as his/her stomach hurting or cramping, or has nausea and vomiting, or refuses food and appears ill or more lethargic than usual, he/she should be immediately taken to an emergency room. Take your Medical Alert booklet with you and inform the medical staff about the abdominal concerns associated with PWS and direct them to PWSA (USA)’s web site at www.pwsausa.org and then go to the site titled Medical Alert.
The staff of PWSA (USA) and the members of the Clinical and Scientific Advisory Boards are available to assist Emergency Room personnel when needed. PWCF will maintain our PWS-Related Medical Crisis Line 310-764-8083 throughout the holiday season.
From everyone at the Prader-Willi California Foundation, have a
Happy and Safe Thanksgiving Celebration!