PWS Blog

The Benefits of Food Security

Posted by The Children's Institute - Feb 19, 2016

For people with PWS, just thinking about food causes high levels of anxiety. And because of their insatiability, they tend to think about food all the time. Insecurity about food causes overeating and medical problems resulting from obesity and poor nutrition. It can also lead to unwanted behaviors such as skin picking, obsessive/compulsive actions and emotional outbursts. Achieving food security helps to address many of the challenges of PWS. By developing a nutrition plan that assures where
the next meal is coming from - and what foods will be served - both children and adults with PWS experience less anxiety, enabling them to fully engage in and 
enjoy other life activities. 

 Food security helps to:
• Prevent over eating and inhibit weight gain
• Improve nutrition
• Promote a healthier lifestyle
• Decrease anxiety and stress
• Decrease unwanted behaviors

A high level of commitment and dedication from families, other caregivers, support personnel and connected loved ones is vital to achieve food security, but it's not an impossible task. The multidisciplinary team at The Center for Prader-Willi Syndrome at The Children's Institute is ready to help every step along the way.

1. Prepare Menus in Advance - Start planning a day or two at a time, with a goal of creating a weekly menu. Include your loved one with PWS in a few preliminary decisions about meal choices and times. Once the plan is set, STICK TO IT. Avoid spontaneity related to food. Predictability decreases anxiety and eliminates disappointment related to false hopes for "treats" or other foods not included in the plan.

2. Post the Plan - Everyone involved should be able to see menus for mealtimes and snacks. It's essential that everyone participate 100% of the time for the plan to succeed.

3. Control Accessibility to Food - At home, lock the refrigerator, pantry, cupboards (or even the entire kitchen) to remove access to food. Supervise and minimize exposure to food whenever possible. At school, plan routes to classes without passing the cafeteria. When considering vocational training, avoid jobs that include food service.

4. Develop Contingency Plans - People with PWS and their caregivers should enter food situations with a plan that can help to manage the circumstances. Prepare ahead how to participate in social events, especially special occasions like birthday or holiday parties. Access restaurant menus in advance to discuss what will be ordered. Stress to others that non-compliance by anyone involved, no matter how well-meaning, is harmful.

5. Ask for Help - Life happens. Children grow, and circumstances change, so plans that work for a few months or years may not be sustainable long-term. Ask the treatment team at The Children's Institute for help in evaluating needs and implementing changes that address evolving challenges.

Food security builds trust and diminishes the brain's hyperawareness of food. The demands of achieving food security are great, but the benefits to overall health, wellness and quality of life are significant.


Navigating through the Holidays

Posted by The Children's Institute - Dec 12, 2014

Holidays can be a stressful time of year for many people for a multitude of reasons. They are particularly stressful for individuals with Prader-Willi syndrome and their families. This time of year, there are many holiday parties and gatherings with family, at school, at work, and in the community. Most of these holiday festivities include food, are usually unstructured in nature and involve many people. All of these factors lead to increased anxiety for individuals with PWS, which may manifest itself in difficult behavior . The following are some behavioral and environmental guidelines to assist you with navigating through the holiday season.

• Make plans. If attending a holiday party with family, at school or in the community, always plan ahead with your child. Let your child know when the party will be, what activities your child will be participating in, and if your child will be eating prior to/after, or at the party. Identify exactly what your child will be eating.

• Review the plan with your child starting a couple of days before the party. Bring a copy of the plan to the party.

• Go over the “rules” for the party. Be specific about expected behaviors. Inform your child of who will be supervising them during the party.

• Host the party. You have much more control over food, structure, and managing the environment in your own home. You can be a model for the rest of your friends and family on how to throw a wonderful holiday party, without having the focus be on food.

• If going somewhere else for a holiday party, know the menu. Talk to the host and plan what food your child can have and what you will need to bring to the party for your child.

• Avoid family style meals. Plan to have the food prepared and served in the kitchen, separate from the dining area. Prepare the plate for your child with exactly what was planned on your child’s menu.

• You and your child may want a “special” place to eat, away from the majority of people who are eating heaping plates of holiday food.

• Once the meal is complete, engage your child in activities away from the dining area. (work from the plan you created and reviewed with your child prior to the party.)

• All food should be put away when the meal is complete so that it does not provide an additional source of temptation or anxiety for your child.

• If eating a meal during a holiday party is just too difficult for your child, you may want to join the party after the meal has been served and leftovers have been put away.

• The important aspect of the holiday season is to focus on the activities at the party and socialization with friends and family. Take the focus off of food! Read More...

Have a Fun and Safe Halloween

Posted by The Children's Institute - Oct 29, 2014

Halloween is an exciting time of year for kids. Costumes, pumpkins, parties, parades… and of course, CANDY. But what do you do when the oodles of candy can be dangerous for your child? How does the parent of a child with Prader-Willi syndrome tackle this candy-crazed holiday? Read More...

A Day with the Pittsburgh Pirates

Posted by The Children's Institute - Oct 07, 2014

Sunday, September 14th was a special day for the Prader-Willi syndrome community in Pittsburgh, because we were able to meet up with our favorite baseball team: the Pittsburgh Pirates! Pirates Charities hosted kids and families from the PA chapter of the Prader-Willi Syndrome Association for a fun filled day at PNC Park. The Children’s Institute’s patients with Prader-Willi Syndrome were lucky enough to be personally invited to spend the day with Pirates’ manager Clint Hurdle and assistant coaches.  Read More...

Back to School Tips

Posted by The Children's Institute - Aug 28, 2014

It's back to school time, which brings new teachers, new friends, and sometimes new challenges. Our inpatient teacher, Amy McTighe, PhD, MEd, answered some questions that she frequently hears from parents of children with Prader-Willi syndrome. Read on, and make it a great school year! 


It's Christmas in July!

Posted by The Children's Institute - Jul 25, 2014

It must be Christmas in July! One of our patients recently wrote a letter to Santa Claus and received a response with the help of our amazing nurses. Read More...

Exciting New Prader-Willi Syndrome Research at The Children's Institute

Posted by The Children's Institute - Jun 26, 2014

This month, we sat down with Dr. Roxann Diez Gross, PhD, CCC-SLP, Director of Research at The Children’s Institute, and Ronit Gisser, M. Sc., CCC-SLP, Research Administrative Assistant, to get the scoop on their most recent PWS research project. They are finalizing results of a study that has the potential to improve the clinical treatment of patients with Prader-Willi syndrome.

What was the focus of the study?

The study looked at swallowing and respiration of patients as they ate and drank. That’s important because, too often, patients with PWS choke and aspirate. This is the first time that swallowing function has been investigated in the PWS population.

May is Prader-Willi Syndrome Awareness Month

Posted by The Children's Institute - May 31, 2014

May is Prader-Willi Syndrome Awareness Month. What month could be more appropriate to launch our new Center for Prader-Willi Syndrome Blog? Several times a year, our expert team members will share insights based on their experiences working with individuals with Prader-Willi syndrome. Read More...

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