Trying to get your child to stick to a healthy diet and maintain a normal weight is one of the most important parts of caring for a child with PWS. It is also probably one of the most challenging and frustrating.
If your child wants to eat frequent servings of food, most of those servings should be low in calories.
A recommended daily diet plan usually looks like this:
- six to eight servings of vegetables a day – one serving is around half a cup of raw vegetables or one cup of cooked vegetables
- three to five servings of bread, cereal, rice or pasta a day – one serving is one slice of bread, or half a cup or 28g (1oz) of rice or pasta
- four servings of fruit a day – one serving is around half a cup of canned or fresh fruit, quarter of a cup of dried fruit, or half a cup of fruit juice
- two servings of milk, cheese or yoghurt a day – one serving is around one cup of milk, 30g (1oz) of cheese or half a cup of sugar-free and fat-free yoghurt
- one to two servings of meat, poultry, fish, eggs or dried beans a day – one serving is 60g (2oz) of cooked lean meat, fish or poultry, one egg, or half a cup of cooked dried beans
Restrict your child's access to sweets and fatty foods as much as possible.
Your care team can give you a more detailed diet plan individually tailored to your child.
Getting your child to stick to the plan voluntarily is practically impossible, so you will probably need to restrict your child's access to food. You can do this by:
- locking any storage devices that contain food, such as your fridge or cupboards (children with PWS have been known to eat food out of the bin or freezer, so you may need to restrict access to these too)
- regularly searching your child's room for hidden food
- not allowing your child to leave the house unsupervised
- not leaving your child unsupervised with other children who are eating, in case they try to steal other children's food
It is also important to let relatives, friends, other parents and teachers know about the need to restrict your child's diet.
Some medications have been used to try to suppress children's appetites, but they have all been unsuccessful.
Weight-loss surgery is not recommended for children with PWS as they do not have the willpower to stick to the strict diet required after surgery.
Exercise
Exercise is an important part of helping your child maintain a healthy weight. Children should do at least 60 minutes of exercise a day.
Many children with PWS have reduced energy levels. Therefore, it may be a good idea to break down their exercise into five to 10-minute sessions throughout the day to stop them getting tired and discouraged. Your child's care team should be able to recommend a suitable exercise plan.
Children with PWS usually prefer individual activities to team sports, such as:
- swimming
- walking
- exercising in a gym
It is important not to promise food as a reward to encourage your child to participate in exercise, as this can encourage unhealthy behaviour.
Read more about physical activity guidelines for young people.
