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

May 11, 2018

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:

  • Individuals with PWS have low muscle tone. Daily exercise is essential for maintaining the muscle tone that they have, improving stamina, and working toward—or staying at—their goal weight.

  •  For individuals with PWS, swallowing issues are common, putting the child or adult at higher risk of choking. To lessen the risk of choking, encourage small bites with sips of liquid after each bite.

  • People with PWS are sensitive to medications. This is especially true for anesthesia. Be sure that your child’s surgeon is knowledgeable about PWS before any procedure takes place.

  •  People with PWS live with excessive daytime fatigue. Allowing several break times throughout the day where they can rest in a quiet place allows for better concentration and a more stable mood.

  • Individuals with PWS have a very high pain tolerance. Complaints of pain, especially abdominal pain, should be taken seriously and evaluated by a physician.

  • Children and adults living with PWS often excel at working with animals. Supervision must be made available due to lack of impulse control and being easily overwhelmed, but with the proper supports, animal care is typically an excellent vocational option.

  • Many people with PWS have challenges with processing speed. Keep instructions short and ask for them to repeat what you just said until you are aware of their ability to process as quickly as you are speaking.

 

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices.