PKU puts your child at extra risk. To level the playing field, you'll have to step up and speak out. You'll learn to be a polite but tough negotiator in many situations.

At school

You need to make sure your child with PKU eats what you pack for lunch, and nothing else.

• Ask for a class rule against sharing or swapping food. That will keep your child from being singled out for special treatment. Most other parents will like the rule for their own reasons.
• Ask to be told about parties, so you can pack a festive low Phe item for your child.
• Request that any uneaten lunch be sent home so you can record your child's diet accurately.

With caregivers

Every time you put your child in someone else's care, make sure they know how serious you are about the low Phe program, including diet and any medicine. Grandparents, babysitters, daycare staff, and teachers all need to be told and re-told the rules. You need to help them understand how high Phe hurts your child's brain.

• Don't be shy about repeating. Tell them again and again. Other people don't live with PKU every day. They are likely to forget if you don't remind them every time they care for your child.
• Write down the rules each time you leave your child with another adult. You can download and print a helpful form to make sure you cover everything.

With your child

You'll spend a lot of time setting rules, making demands and, yes, nagging your child. That's what it takes to manage the daily details of PKU. So, be sure to take every chance you get to tell your child you're proud of him or her. Admire skills. Applaud effort. Remind your child about all the good things that he or she does. Most of all let your child know how much you enjoy his or her company.

Next: Your child's diet