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PKU Diet & Formula

If you have phenylketonuria (PKU), your body cannot process a chemical called phenylalanine (Phe).  Phe is one of several amino acids that are the building blocks for the proteins that we eat, and that we use in our bodies.  In order for you to stay healthy, you must avoid Phe, but consume the other needed amino acids.  The way you do this is by taking the formula, also known as medical food.

What’s in the formula?

Formula for people with PKU contains all the essential amino acids except Phe.  You need formula throughout your life to function well, feel good, and stay healthy. Formula is the foundation of the PKU diet. If you have PKU, restricting your protein and Phe intake without taking the formula would be dangerous.

Sometimes the formula may have a strong odor or taste that makes it hard for some people with PKU to consume. And preparing, carrying and remembering to take formula every day can be challenging. However, without formula it won’t be possible for you to control your PKU.

Formula helps you in many different ways to:

  • Get the amino acids needed for your body to function normally
  • Balance the amino acids in your blood and brain
  • Not feel hungry
  • Repair and build cells during illness
  • Give you energy throughout the day
  • Increase your concentration and focus
  • Improve sleep
  • Build muscles cells

If you dislike your formula, there are a variety of options and combinations for you to taste, so you can choose one that is right for you.

PKU Formula Tips

When it comes to preparing and taking the formula, here are some ideas for making it a good habit:

  • Prepare and take your formula everyday around the same time. Make it part of your daily routine.
  • Plan ahead. If you know that your day will be busy, make a double portion and carry it with you. It’s ok to mix some formula in advance, most formula can be kept refrigerated for up to 24 hours
  • Have your formula in the morning to start the day off right. If preparing it in the morning is too difficult, prepare it the night before.
  • Don’t leave home without it. If your formula is not available in single serving packages, use small plastic containers or jars that can hold 1-2 servings and take it along. To keep it cold you can freeze half the formula in a plastic container overnight. Then add the remaining formula and have cold formula to take with you. You can also take already measured formula with you and get cold water or another beverage for mixing it. That way you can have fresh cold formula any time and place.
  • If you do forget and leave home without it, prepare back up servings of formula in bags or containers and place them in accessible places for you during the day: in your school bag or purse, locker, desk at work, friends house, parents’ or significant others’ home.
  • Don’t run out of formula. Plan ahead and keep track of how much formula you have so you can get or order more before it’s finished.

Here are a few more formula preperation tips —

  • Make a shake by adding ice cubes to your formula in a blender
  • Freeze your formula for 1-2 hours and then eat it with a spoon
  • If your formula is unflavored, try mixing it with a new beverage or food
  • Find interesting glasses.

Keep in mind: You cannot control your PKU by only restricting protein and Phe intake. Low-protein foods are not the same as formula. Low-protein foods are specially made products, such as bread and pasta, that are low in Phe.  These can help you keep your Phe levels down.  But you still need to take the formula to get the other amino acids your body needs. Even if taking the formula regularly seems like a big challenge, it is worth it to make it part of your life.

There are many new options for formula products, flavors, and amounts. Talk with your dietician about which will work best for you!

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