Hyperphagia is uncontrollable hunger.
“Think of PWS as a ‘starvation’ syndrome rather than an over-eating one. There is no on/off mechanism that tells the brain, “I’ve eaten enough”. The brain keeps telling the stomach, “you’re starving, you need food”. The drive to find food overrides everything else. ” – Gary Brennan, National Development Manager PWSAI
Food security is not just about keeping food out of reach – it is also about keeping food out of sight and mind. Removing temptation to take food also removes the thought of food which is preoccupying all thought. By taking that thought away, an individual is able to focus on other things
What can you do to support a person with PWS:
- Set up rules and routines around food, such as only eating at the table and set meal times.
- Decide as a family how you will manage out of the ordinary events such as birthday parties.
- Consistency is key. Make sure the person with PWS understands that food will only be available at meal times. This may require locking cupboards and fridges.
- The ‘Food Security’ method works well, both for weight management and for reducing preoccupation with food and associated anxiety.
- It is also a good idea to teach the person with PWS about nutrition and for them to know what is good and bad for their body.
These are the principles of Food Security developed by the Pittsburgh Partnership:
A predictable menu sequenced in a predictable routine (focus on sequence rather than time) allows the person to relax and think less about food.
+ NO HOPE
No unplanned extras or opportunities for access to food. Chances to obtain food cause stress. Modify measures as food seeking varies and fluctuates.
= NO DISAPPOINTMENT
The person only has expectations that will be reliably carried out. No other expectations have been raised so there is no disappointment when these are not realised or fulfilled.
How can you support a person with PWS who is asking for food?
•Deny ‘No, it is not time’. – No means No.
•Delay – If snack/meal time is not far away, a timeline can be given. eg., we have 2 chores to do and then it is time for snack.
•Distraction – Lego, jigsaw, sticker book, match all the socks, tv time, go for a cycle, walk the dog… keep busy!
A daily meal tracker – a visual to help reduce anxiety about what the meals will be for the day.
Tip: Laminate and use a whiteboard marker to make it reusable.
This is for a day that is broken into 5 meals, if you need an alternative to suit the person with PWS you care for, email firstname.lastname@example.org
Food Diary: keeps track of daily intake
Sources: Prader Willi Syndrome Association New Zealand, Pittsburg Partnership