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PKU and quality of life: What to expect?

The first questions after a diagnosis of phenylketonuria

Soon after metabolising the shock of discovery, the family of the newborn PKU-child turns their thoughts to the future.

What will the life of our child look like? Can there be any limitation? If so, what?

In short, by following the prescriptions of the metabolic center and staying on a diet for life, one can protect themself from the serious consequences of the untreated disease.

3 rules for everyday life

This means that, rather than from real limitations, PKU-treated life is characterised by:

 

  • High level of attention to food
  • Organisation (of meals, travel)
  • Creativity!

 

Let's go into more detail.

Attention to what you eat.

The presence of a too high protein content, and therefore of phenylalanine, compared to the individual tolerance, makes the food unsuitable for the PKU patient. The diet is always outlined by a health care professional, who will define it carefully, and will give valuable advice on how to adapt it to social life.

It is important that the PKU child is quickly made independent and able to assess for themselves what to eat: nutritional education will help them to face all situations, to recognise the hidden pitfalls that adults who caring for them cannot ignore (especially, aspartame).

Food on offer today is so wide that staying on a low protein diet is much simpler than in the past, but paying attention is always a must.

  

Organisation

Special low protein food and protein substitutes are more and more varied and easily available, but organising their own stocks, it is up to the PKUer and their family. When planning school meals, but also a trip, it will be very important to take the time to plan this aspect as well. Organisation is key and ensure any difficulties will be reduced to a minimum.

Even making sure you have accurate information, when it comes to do something special, will be of great help. For example, when going out for dinner, it will be important to know in advance if the restaurant you have chosen has low protein dishes available, or if the manager is fine to prepare something on request.

Creativity!

Whether it's preparing a low protein meal or diluting the protein substitute, being creative will be extremely important to stop the diet from being boring.

A recipe book or the advice of those who follow the same diet will always be valuable.

A selection of tasty low protein ideas can also be found here.

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