The weaning phase begins with the introduction of liquids and solid foods.
In a sense, for PKU children the diet starts now.
The therapeutic indications of the metabolic center will clarify any doubts regarding nutrition.
As additional support, it may also be useful to contact parents of older PKU children, who will have already faced practical situations, such as the random ingestion of unsuitable food, any difficulties in moving to a new protein substitute or the desire of trying new food.
Work on awareness
Once balance is found, the great challenge awaiting PKU families is to make their children aware and independent as soon as possible, where food is concerned.
A good education in this sense will also be supportive in dealing with life outside the home.
The first step is to explain clearly, with an appropriate terminology to their age, what PKU is.
The more knowledgeable you are and your ability to describe reality, the more you will help your child to understand and explain PKU to others, so that they will help him and will feel no fear of hurting him with the food they prepare.
Outside the family
In the relationship with people outside the family, it is good to stress that:
- PKU is not an allergy
- There is no risk of food contamination
- Making exceptions is not an option
PKU is not an allergy.
PKU deals with protein metabolism, specifically in relation to phenylalanine. Eating high-protein food does not provoke a skin reaction and there is no risk of anaphylactic shock. The consequences of an incorrect diet for a PKU person are very serious, not only when they are very young. Outcomes are not sudden nor immediate, rather caused by the accumulation of the substance that becomes toxic in the body.
There is no risk of food contamination.
Cooking special low protein pasta with the same pot in which the common one was boiled just before, is not an issue. What is important for PKUers is to eat their special products or natural food which is naturally low in protein.
Making exceptions is not an option
Since this is a “quality-of-life-saver” diet, it is absolutely not the case to follow it intermittently. The efficacy of nutritional therapy lies precisely in compliance.
Emphasising and sharing this concept with those around you will help you to refuse food that can be harmful to your body.