Challenges at every age: Learn, share, monitor

Learn: When your child is a baby, you have lots to learn about PKU, Phe, and how to keep Phe low. It seems like a lot at first, but you will find it quickly gets easier. At least, while the child is a baby, you can have complete control of his or her program.

Your child's PKU treatment may include many parts. The low Phe diet is critical. If your child is taking medicine¹⁴ to lower Phe, you'll need to get in the habit of getting and dosing it. You may want to get help from experts including dietitians, doctors, and therapists.

Share: Soon you will discover you have a new job: teaching other people about your child's PKU. You will need to explain that high Phe levels hurt your child's brain. Family members, the babysitter, daycare and teachers all need to know how important it is to make sure your child is eating only the low Phe foods you supply. You will make sure other adults know how to follow medication schedules and dosing if your child is away for any length of time.

Monitor: As kids get older, they want more independence. One way they show this is by eating more off-diet foods. In fact, studies show that as children grow into teens, their Phe control becomes poorer.¹⁹

You may have to monitor your child more closely by taking more blood tests, more often. You may need to keep working with your older child or teen to teach them how to manage their PKU diet for the best outcomes. It is important that your teen learns to make a habit of taking any PKU medication. You will be the one who helps your child learn to take care of his or her brain for life.

Learn more about helping your child from other parents on this site in the PKUniverse.

Next: Family life and PKU