PWS Blog

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 behavior difficulty. 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 at the party, 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 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/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 off of the plan that 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/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 put away.

• The important aspect of the holiday season is to focus on the activities at the party and socialization with friends/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 the 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 fill 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 the 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, 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. Read More...

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 the Center for Prader-Willi Syndrome Blog? Each month, our expert team members will share insights based on their experiences working with individuals with Prader-Willi syndrome. Read More...

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