Tip of the Week: PWS Awareness Month (Week 2)

May 10, 2019

In honor of Prader-Willi Syndrome Awareness Month, we’re sharing a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips:

  • Due to thick saliva, people with PWS have issues with dental hygiene. Thick saliva erodes the enamel and causes early tooth decay. Good dental hygiene practices and good hydration are crucial to healthy teeth and gums.

  • People with PWS have an extremely high pain tolerance. Pay close attention to changes in behavior or a decrease in typical activity. Sometimes changes in activity are indications of injury since self-report of pain is unusual.

  • Uncoordinated swallow is common in people diagnosed with PWS. Encourage small bites with slow-paced eating, ideally with a sip of liquid in between each bite.

  • To avoid feeling isolated, try to connect with other families who have children diagnosed with PWS. There are many online opportunities for connection and always try to get to a conference whenever possible. Parent support is a wonderful way to help with the journey.

  • People with PWS live with higher than typical levels of anxiety all of the time. When that anxiety increases, we often see behavioral outbursts. Try to avoid triggers, keep to a routine, and allow for breaks throughout the day to avoid increased anxiety levels.

  • Collecting or hoarding is a common behavior in PWS. Allow for some space for their most valued treasures but when the collection starts to grow beyond their allotted space, donate or remove some of the items to avoid excess clutter. A messy or cluttered physical space can lead to feelings of being overwhelmed and anxious.

  • Many people with PWS live with sensory processing disorder. If new behaviors start to appear, be sure to check their environment. Are the lights too bright? Clothes too tight or new and stiff or scratchy? Is there a noise that you can ignore but they may not be able to? All of these things can impact their ability to focus and remain calm.

 

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi syndrome specialist. She works with Latham’s residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices. Do you have questions for our PWS specialist? Submit your “tip” topics or general questions to TipTopics@LathamCenters.org.