A toddler thrives
Progress is made. The quiet, motionless baby has become a charming toddler who becomes more mobile and usually learns how to crawl at the age of 15 – 18 months. With its gentle little voice it often draws attention to itself and tries to babble its first words. The tedious feeding is a thing of the past, and soon the toddler with PWS can take a seat in the high chair at the family table and spoon its porridge.
Parents should now start thinking about PWS-appropriate nutrition and eating within the family, even though most children with PWS do not develop an eating addiction until somewhere between the third and fifth year of their life. The nutrition pyramid of the German Society for Nutrition offers some initial orientation for the conversion of the family meal. This offers children with PWS and their families a balanced mixed diet with a high nutrient density.
Family eating habits put to the test
Since a person with PWS only needs about 2/3 of the energy that a healthy person of the same age needs, parents should already start to pay attention and make sure that their child avoids sweet and calorie-rich foods, which is not an easy task. The family loves to eat and cannot do without their Nutella for breakfast. And what would a cosy family TV evening be without a fizzy drink and crisps? For a child with PWS, sweets and fatty food should only be eaten on very special occasions. If they are offered, then it should only be in very small quantities. Their diet should always aim to avoid obesity and achieve a healthy weight.
An infant with PWS needs 60 – 70 kcal per kg of body weight per day until the age of 1. Infants with PWS aged 2 – 3 years of a normal weight may consume 500 – 700 kcal daily and 600 – 800 kcal for 4 – 6-year olds. However, parents should not be tempted to give their child too few calories because of concerns about possible obesity.
The same applies to what the infant drinks. Here, too, parents should make sure that their child does not get used to fizzy drinks or juices in the first place, but should aim to get their infant to drink water and unsweetened teas. Many parents report that their children with PWS are reluctant to drink.
Regulated meals with subsequent dental hygiene
Just as important as what the child eats and drinks are the circumstances in which the child eats. How long does it take a butcher to give a toddler a slice of sausage? A quick sandwich in the pram on the way due to lack of time, and at the playground all the other mothers constantly offer their children a biscuit or some other treat as a snack. Very strict food rules are conducive to handling the eating addiction in the right way. A child with PWS should learn from the start that there are a certain number of meals – usually five – and nothing in between.
They should know that they only eat at the table and that the portion in front of them is intended for them and them alone. Give your child the opportunity to concentrate on the food, for example by switching off the television. Consistent dental hygiene after every meal, preferably from when the first tooth appears, should also be part of the rules and thus an integral part of the daily routine. Because of their viscous salivary flow, people with PWS often have major problems with caries.
A small lively child discovers the world
A child with PWS usually learns to walk freely between the 15th and 84th month (average age: 28 months). The child’s joy of movement also extends to all kinds of vehicle. Not only does it rush around with its Bobby car, but also on its push bike. But caution is called for. Even though the child’s motor skills have developed, they do not correspond to those of their peers without PWS. Due to their weak muscles they are not always safe walking on their own two feet, and this may result in a bruise now and then. Since people with PWS have a tendency to bruise, you should inform them about the environment to avoid any unnecessary accidents.
A proud preschooler
At the age of three, at the latest, a new exciting time is dawning: preschool. The child with PWS is now able to speak one to three sentences and usually understands much more than it can express linguistically. It knows how to call attention to things and to express its wishes and desires. Some children with PWS already show a pronounced preference for rituals and routines. Now is the time for further development within the group. Parents have previously been thoroughly informed about the guidelines and codes of conduct of local daycare centres, and it is often small integrative facilities that are most likely to meet the needs of children with PWS. In preliminary discussions with
educators, the parents can clarify to what extent things can be adjusted to the child’s needs, especially when it comes to food: fresh, wholesome meals, no free-standing food designed for self-service, fixed meal times. Also with regard to the popular birthday celebrations where a child is given a slice of birthday cake it is important to set rules and inform the other parents about the Prader-Willi Syndrome. Such a preschool routine is quite exciting and exhausting, especially for a toddler with PWS. Gentle acclimatisation to preschool, possibly only a half-day, allows the child to integrate slowly and without pressure into the school.