For Family & Friends: Food Management

Food Related Tips

Remember that food is a constant source of anxiety for the individual with PWS.  Holiday meals or meals away from home and the normal routine are very stressful for both the individual with PWS and their families. Anything that you can do to reduce that anxiety is greatly appreciated by the individual and the family.

If you’re having someone with Prader-Willi Syndrome visit your house:

  • Remove all candy, mint, and nut dishes that you may typically have out.
  • To the extent possible remove food from kitchen counters. Out of sight is not necessarily out of mind for the person with PWS, but it definitely helps.
  • Discuss food to be served at meals/parties ahead of time with the parent/caretaker. This allows the parent to prepare by:
    • Bringing an alternative for their child
    • Cutting calories elsewhere in the day to allow for a treat/higher calorie meal
    • Letting the child know what to expect
    • Helping you chose good options for the individual
  • Let your friend know what time you plan to serve meals or snacks.
  • Avoid talking about food in front of the individual with PWS. For example “Who wants pie?” after Thanksgiving dinner can be very stressful. Perhaps your family member was going to leave before pie was served, or maybe they were going to allow a small piece as snack but it’s not time yet.
  • Avoid eating in front of the individual with PWS if it is not also time for them to eat.
  • Do not offer the individual with PWS any food or beverages without asking (away from the person with PWS) their parent/caretaker first.
  • Defer questions about food to the parent/caregiver (or to the plan provided if left in your care).
  • If someone with PWS is left in your care, follow their food plan exactly.
  • Remember that for the individual with PWS “just one”, or “just a little bit” does hurt.

If you’re out (restaurant, amusement park, etc.) with someone who has Prader-Willi Syndrome:

  • Discreetly discuss when to eat if a set time has not been decided beforehand.
  • Avoid eating in front of the individual with PWS if it is not also time for them to eat.
  • Do not offer the individual with PWS any food or beverages without asking (away from the person with PWS) their parent/caretaker first.
  • Defer questions about food to the parent/caregiver (or to the plan provided if left in your care).
  • If you or your child want a treat (cookie, ice cream, etc.) find a time to do that away from the individual with PWS.

Make Connections

PWCF maintains online and in-person Support Groups for parents and professionals. Friends and family are welcome too.

PWSA (USA) maintains several Facebook support groups.