Tip of the Week: PWS Awareness Month (Week 3)

May 18, 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:

  • Even if an individual with PWS has good safety skills (crossing the street, the ability to call for help when needed), don’t assume that those same skills will be used when they are upset. Heightened anxiety can get in the way of knowing what to do in an emergency.

  • Many individuals with PWS have obsessive behaviors. Verbally asking the person to stop will likely increase the behaviors that you are trying to decrease. The best thing to do is offer an alternative activity when you see the behaviors occurring.

  • Children and adults with PWS have difficulty regulating their body temperature because of a dysfunctional hypothalamus. Watch for hypothermia in the winter and heat exhaustion in the summer.

  • Skin picking is a common behavior in people with PWS. Keep nails short, cover bug bites, avoid sunburn, and monitor all pick sites closely for infection.

  • People with PWS often feel off-balance and can be hesitant to walk on uneven terrain. Any activity that exercises their vestibular sense can improve their ability to walk confidently on any surface.

  • Early onset osteoporosis happens frequently in the PWS population. Speak to your child’s doctor about bone health from an early age.

  • Many people with PWS have hoarding behavior. Use visuals to keep rooms organized and once their collection grows too large, help them donate or throw away excess items.

 

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.