Hunger of the mind – compulsive eating is not a pedagogical problem
It is not chronic physical hunger that makes people with PWS feel compelled to eat. Rather, hunger is in the mind and is essentially due to two aspects: people with PWS do not know what “to be full” means because their hypothalamus does not provide them with a feeling of fullness. In addition, it features a more childlike personality structure, and that in turn leads to an increased basic need for food. In this respect, hunger is not an educational problem, but a biological one. In the worst cases, the addiction goes so far that people with PWS steal food and can even be caught eating spoiled or frozen food. Therefore, with the help of their parents and their social environment, they need to learn how to handle food and need strict food control throughout their lives from an early age.
In most children with PWS, compulsive eating starts between the ages of two and a half and five. Because the enormous progress in medical research over the past 20 years has led to a significant increase in the number of people diagnosed with PWS, a great deal more experience has been gained in treatment. Today, PWS is often diagnosed in the first months of an infant’s life and parents are informed accordingly early on. They know from the very beginning that strict food management is part of everyday family life.
Many people are “different”
Food management means making sure that the food is as low in calories as possible. Excess is taboo and sweet and fatty foods are exceptions in the diet of people with PWS. Even if the parents are still able to control this well in early childhood, the demands increase as social integration increases. In many public institutions such as preschools or schools, it goes without saying that breaded or fried foods or even desserts such as rice pudding are regularly served at lunchtime.
If the institution cannot be persuaded to cook a separate meal for the child with PWS, many parents start to give their children packed lunches from home on a regular basis. The fear that your child will feel “different” is often unnecessary. Both religious and allergy-related requirements mean that other children in the pre-school group or school class also eat their own food from home.
“Does the little one want a slice of sausage?”
It’s not only what is eaten that is part of food management; how food is eaten is just as important. People with PWS need a clear meal structure they can rely on. There is always food at a certain time in a certain place. It is neither a punishment nor a reward. What sounds so simple often presents families with unexpected challenges in everyday life. The slice of sausage offered by the butcher is just as unsuitable as the muffin spontaneously produced by another mother at the playground. Sometimes it is also necessary to operate the same routine at the school that the child visits. If, for example, sweets are offered to a child when it has done something well, you should encourage the teacher to switch his or her methods of praise to stickers or the like.
You should provide your children with safe situations during meals, for example by announcing when and where they will be able to have a snack during excursions. And if you promise your child a certain meal for supper in the morning, you should stick to it – regardless of what other spontaneous meals have been served during the day. If the family remains seated at the table after eating, you should make sure that plates and bowls are cleared away so that your child can take part in the conversation without distraction.
Daily sport and exercise
In addition to consistent food management, two other aspects are of enormous importance in keeping weight under control in people with PWS. On the one hand, most children and adolescents with PWS today receive growth hormones daily until the growth plates have closed – sometimes even beyond. The growth hormones ensure that the child reaches its originally intended genetic size and that the body mass can spread over more height. On the other hand, exercise and sport should naturally form part of every daily routine. What starts with physiotherapy for the little ones turns into a variety of sports for the older ones, such as cycling, swimming or horse-riding. Due to muscle hypotonia, people with PWS are usually somewhat slower than their peers. This is why team sports or sports that require a lot of agility and speed are less suitable.
Personalities full of character
Compulsive eating is just one of the many symptoms of PWS. People with PWS, for example, like to approach other people and have a strong need for physical closeness. But although they are very friendly, humorous and warm-hearted, with increasing age and social interaction there are very pronounced phases of defiance. These can sometimes be caused by small things that are difficult for others to understand. However, one key reason is that people with PWS are as self-determined as any other person. However, this need is hardly compatible with the fact that they have to give up responsibility for and management of their diet for the rest of their lives. Inner shame and teasing are often added to make matters worse.
Because people with PWS are sometimes unable to express their very high emotions adequately, there can be very spirited outbursts and corresponding friction within the social environment.
As with other genetic defects, the severity of the various symptoms of PWS varies greatly from person to person. These are not static, but change with advancing age. In this case, getting a food addiction under control in particular can become a real test for families. Because even if everyone pulls together and even if people with PWS have the appropriate level of development and knowledge and know about their problem, episodes of binge eating can always occur.
PWS is not static
For the parents, therefore, the task remains to create an emotional framework in which their child feels accepted and the food is controlled. The need for food remains in the foreground of the experience and must be sufficiently satisfied. However, a secure outer framework and structure gives people with PWS the freedom they need to develop other things that bring them joy in life.