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Having a child with PKU means you will have to tell many other people about your child's disease. You will need to be clear and firm when you put your child in someone else's care, from grandparents to daycare staff to teachers.
People will not mean to do your child harm. But they don't know about PKU. They don't know how high Phe hurts your child's brain. At first, they may have trouble believing that something like a hotdog can really be so bad. They also may forget or get confused over time, even after you tell them many times.
It will be your job to tell them up front, and then to follow up often to keep everything on track.
Educate
Tell all adults who may care for your child about PKU. Explain what can happen, and how serious the low Phe diet is. Make sure babysitters, teachers and friends know. As your child gets bigger, include neighbors and others. (You never know when a well-meaning local mom might offer the kids a snack.)
Repeat
People don't always understand or remember the first time you tell them something. So repeat your messages about PKU often. It's too important to leave to chance.
Be polite but firm
Most people will be able to listen best if you are calm and polite while you inform them. But don't leave any room for doubt that you're serious, and this is important.
Use support materials
Get copies of booklets and tools that can help you explain about PKU. Some people may keep these to help remind them of the rules. You can also send people to this PKU website to help them understand about PKU and your child.
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