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

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:

• It is common for people with PWS to not like to drink water. Be creative by adding fruit, cinnamon sticks, or mint to plain water and you will likely see that with a little flavor, people with PWS will drink water throughout the day. Today is the 11th day of PWS Awareness Month.

• Having a child with a special needs can be exhausting and, at times, isolating. Always remember that you are not alone. Reach out and look for help whenever you can.

• When giving instructions to a person with PWS, be sure to remember that their processing speed may be slower than typical. Try one step instructions and wait for the task to be completed before giving the next step. 

• Sticking to a strict daily calorie count and menu is important for two reasons: (1) Knowing what and how much they will eat each day keeps anxiety about food at a minimum. The unknown can cause high levels of stress. (2) People with PWS have a very slow metabolism and even a few extra calories per day can easily cause weight gain.

• The majority of people with PWS never complete puberty. Despite this, having romantic relationships is still an important part of their adolescence and adulthood.

• Change is incredibly difficult for a person diagnosed with PWS. Add some minor changes into their routine often. Drive home a different way; avoid using the same cup or brand of toothpaste, for example. If you allow your child to get stuck on something, it will be very difficult if in the future that item is no longer available, or if there is a detour on the road, or if a certain TV show is cancelled. There is a difference between something that they like and something that they cannot let go of. Try to catch it before it turns into the latter.

• Making the decision to pursue residential placement can be extremely difficult. Consider the safety and quality of life of your child and other family members. We are here to help with the process and always welcome families to come to Latham Centers and take a tour. Talk to other families and see what their experience has been like.

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.