Your movements

Monitoring

You are responsible for the diet of your child; whose health depends on achieving a metabolic balance (monitored mainly by looking at the child’s health status and blood tests). It is therefore important to check for metabolic balance very often by means of a blood sample taken on blotting paper or in a vial.

Weight gain is the best indicator of a balanced diet. It is therefore essential to weigh your child regularly, even when in good health status, with the same frequency as blood concentration tests (during infancy). The medical team will help you to follow the diet and achieve a proper blood concentration balance to favour normal growth and development.

The child’s growth and nutritional status will be checked in monitoring consultations. Its diet will be adjusted regularly based on blood concentrations and, to a greater extent, at certain age milestones.

Do not hesitate to get in touch with the healthcare team if you have any questions or are having any problems. They will help you on a day-to-day basis.

 


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.

 

Find out where the nearest hospital is just in case. Ask the doctor from the healthcare centre whether he or she knows a representative and to warn this person of the possibility of having to treat your child within a certain period (always carry an emergency admission certificate with you).

Ask for a travel authorisation (or whether it is advisable to travel) for your destination.

If you want to travel abroad, ask for an authorisation for your destination. Get a certificate proving that you are carrying special foods for your child’s diet to make sure they are not seized by Customs. There are very few summer camps (when your child is the right age) where your child’s diet can be monitored properly.

These camps need to be on sites with adequate healthcare facilities for your doctor and dietitian to be able to manage your child together with the reference team and, of course, yourself. 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 and disorder.

In the event of classes in the field, by the sea, or in snowy areas, contact the house manager beforehand to find out the exact address of the excursion and how the week will be organised; activities, picnics, etc.; find out whether meals are delivered by a caterer or the local town hall, or if there is an on-site kitchen with a cook. If it is the latter case, ask to get in touch with the cook to plan “adapted” meals, including preparing or cooking meals separately, and provide enough special foods.

Then, get in touch with the teacher to tell him or her about your child’s food restrictions and get her consent. You can also offer to come along as a “companion” or, to make sure your child does not feel completely dependent on you but still feels reassured, one of you (Mom or Dad) can stay nearby to “be there” without actually being physically next to the child.

 


Sports

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, leucine 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.