On behalf of all of the employees at PWHO, we would like to wish you and your family a warm and wonderful holiday season. We would also like to stress the importance of taking extra precautions this time of year in regards to the excess of food that an individual with PWS may encounter during the holidays. Especially during this time of the year, food plays a large role in the American culture. From holiday travel to holiday celebrations, the temptation to indulge in these “extras” is profound.
While all individuals’ diagnoses with PWS should take caution, this time of year can be particularly dangerous for individuals who live in a residential setting and travel home during the holidays to visit family and friends. For those individuals who live in a residential setting outside of the home, their diets are carefully managed on a daily basis and are used to smaller portion sizes and a overall lower caloric intake. When allowed to eat amounts that surpass what they are used to getting, it puts them at a serous health risk that could lead to complications including gastric dilation, possible perforation, and even death. And while families may feel that exceptions can be made due to the holiday season and because their food is managed so strictly, it is extremely important that their diet remains consistent whether they are in the residential setting or visiting home.
Symptoms to watch for:
• Stomach hurting
• Stomach cramps
• Nausea and vomiting
• Stomach hard or distended
• Refuses food
• Appears ill
If an individual is experiencing any of the above symptoms, they should be taken to the emergency room immediately. Hospital staff should be educated on the medical concerns associated with PWS. We know that it is next to impossible to prevent every food theft situation, nor can we completely avoid the anxiety surrounding the fact that they are hungry and secretly hoping someone will leave something out, however we can all use a reminder of how serious this syndrome can be even when they are doing well.
Here are some ideas to help make the upcoming holiday season fun and safe this holiday season.
• Plan lots and lots of “food free” activities-including making Christmas cards, making ornaments, decorating the house, going for a slay ride, caroling, wrapping presents, seeing a play, going ice skating, making a snowman, and going sledding.
• Educate family and friends on the “no extras, no guilt rule” prior to holiday gatherings.
• Plan the menu for holiday parties ahead of time to ensure that there are plenty of healthy low-calorie options available.
• Discuss food choices ahead of time including how you will handle seconds. For example: only allow seconds on vegetables and calorie free beverages.
• If possible, keep the food in a separate area away from where everyone socializes.
• Avoid pot luck or family style dining.
• While at the gathering, prepare the plate ahead of time and serve it to them so that they are not tempted to take more than they should or have an opportunity to make the not so good food choices.
• Send all leftovers home with your guests or leave uneaten food at the party so that no leftover would be available once the party is over.
• A good exercise routine is always important especially before and after holiday parties or gatherings.
• Keep treats to a bare minimum. Use sugar free hot chocolate, fat-free sugar free ice cream, fat-free sugar free cool whip, bake cookies using low calorie sweetener. Bring a veggie platter to parties and low calorie dip.
Here are a low calorie party pleasers-only 25 calories each! Tomato Treats: Place 1/4 ounce piece of lean meat (turkey breast, chicken, pork tenderloin) on a cheese flavored mini rice cake, place one-half cherry tomato on top with a sprinkle of parmesan cheese. Brown lightly in a toaster oven or serve cold.
Cucumber Sandwiches: Use “lite” wheat bread (40 cal.) Spread a thin layer of horseradish sauce on two bread slices. Make a sandwich with 4 slices of cucumber and ½ cup of alfalfa sprouts. Cut into four squares.
Spinach Balls: Mix together one 10-ounce package of chopped spinach (thawed and drained), 3 egg whites, 1/4 C. grated parmesan cheese, bread crumbs (from 2 slices of regular bread), 1 t. minced garlic, and 1 T. chopped onion. Shape into 18 balls. Bake on a cookie sheet for 20 minutes at 350 degrees.
Ham Rollups: Spread a one ounce slice of low-fat ham with 2 T. low-fat cream cheese. Sprinkle with chopped green onion. Roll up. Cut into 3 pieces. -Recipes by: Teresa Kellerman
From our homes to yours, we would like to wish you a safe and happy holiday seasons filled with warmth, peace, and love. Prader-Willi Syndrome Medical Alert books can be acquired from: Prader-Willi Syndrome Association (USA) www.pwsausa.org