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Back to work: child care

You may be asking yourself how you can go back to work if your child has just been diagnosed with phenylketonuria (PKU).

Two cases in point:

  • you can either take parental leave to familiarise yourself with the disorder and its treatment;
  • or follow your initial plans: You had considered calling upon a minder, wet nurse, joint custody or kindergarten to take care of your child.

Weekends and holidays

You need to plan ahead. If your child is visiting relatives or close friends, go over his or her meals with the hosts and provide any necessary special foods.

It is important that your child leads a normal life and is able to spend some time at the homes of their cousins, friends or grandparents, “without you”.

Gradually RAISE AWARENESS among those close to your child! Remind them that it is perfectly normal to make children happy by giving them sweets.  What is important is to give your child sweets as well, even if they are not the same as other children’s. They need to get used to giving your child certain foods but not others.

For longer holidays and, of course, when your child is old enough to become more autonomous, you need to plan ahead:

  • stock up on enough low protein foods and amino acids mixes to last the entire period;
  • send the prescriptions to AGEPS (if you live in France) well in advance to make sure you get the products you need on time, especially in the summer!
  • make sure your child strictly follows his or her diet, either because he or she is capable of doing so alone or through a third party, and find out whether it is possible to cook foods.

If you are taking your child on holiday, go to places where it is not too difficult to cook (even if it is something simple such as pasta or other starchy foods). If you are travelling abroad, get a medical certificate proving that you are carrying special foods for your child’s diet to make sure they are not seized by Customs.

Your child can go on holidays without you —there are “summer camps” where his or her diet can be controlled. Ask the social worker of your reference service for a file to sign up your child.

You can also call upon the Parents’ Association to find out whether it is possible to set up “exchanges” between families with children who have the same diet. In adolescence, the diet may be broadened as higher levels of phenylalanine are tolerated due to their less toxic effects on the brain, but be careful not to relax it too much!

The disease goes “unseen”, but potential consequences include trouble concentrating at school and changes in the child’s personality or behaviour, including tiredness and irritability. These reasons may lead teenagers to tell their friends why they follow a special diet!



Your child can practise all sorts of sports. Your child is no weaker or less fit than any other. Let him or her choose a sport!

At any rate, regardless of age and the specific circumstances, phenylalanine intake needs to be restricted and the child needs to take the entire prescribed amount of the mixture of amino acids.

The right balance of phenylalanine plasma levels can be achieved by taking the amino acids in 3 or 4 doses, preferably at the same time as consuming natural protein in order to promote anabolism.