Sign up

Join the PKUniverse today! Be part of the PKU online community, where you can get ideas, share your thoughts, ask questions, and make friends. Registration is free and fast.

Share your smarts!

Do you have a tip, recipe or insight that might help others with PKU? Tell the PKUniverse now!

Fitting PKU into your day

By now, you know a lot about PKU, a low Phe diet and how Phe affects you personally. Up until now, you've had a lot of help from your parents and/or caregivers. They planned and made meals for you. They did the shopping. They made sure you took your formula.

Now, these tasks are starting to become your responsibility. Fitting in all these extra steps can seem like a lot to do on top of your school work, sports and other activities you do. Here are some ways to make it easier:

Plan

How to fit PKU into your life

Once a week, take a look at your whole schedule. Check to see when you will be eating away from home. Notice if there are times you'll need to pack a snack, a meal or formula. Mark them on a calendar, so you'll be ready as your week rolls on.

Set up for success

Carry a cooler to manage your diet and Phe levels

Some simple tools can help to make low Phe eating easier: have a cooler in which to carry a lunch or snack, keep a Phe food guide in your bookbag or purse, carry some low Phe snacks in your bag or the car. With these tools you're ready for anything.

Simplify

vegetables are foods low in Phe

Give yourself some easy "go-to" options when time is short. Think about 3-4 snacks or meals you like that are fast and simple to make. Make sure you always have on hand what you need to make those meals.

Prepare to eat out

Find PKU-friendly foods when you dine out

Pick 3-4 foods you like that are easy for non-PKU friends to offer you, or that you can find at most restaurants. When the need arises, you'll have a few options at the top of your mind. That way, it's not a big issue every time you want to eat while you're away from home.

Remember: lower is better*

The more you control Phe, the better your brain can work.3,5,21 Keeping Phe low will help you be able to plan, schedule and do the things you want to do.

* Lower is better until you get Phe into the normal range of 1-2 mg/dL. Going lower than 1-2 mg/dL can be unhealthy. Talk with your doctor about the right target range for you.1,2