PKU Toolkit - A Guide to PKU Management for Teens and Young Adults - Produced by Children's Hospital Boston, Applied Nutrition, and the New England Consortium of Metabolic Programs
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Diet & Formula

Formula is the foundation of the PKU diet. Restricting your phe intake without taking the formula would be dangerous.

But what exactly does formula do?

Formula, also known as medical food, is specially designed for someone with PKU and is nutritious and good for you. Your body needs protein to grow and develop normally. Since you are restricting protein intake in foods, you need to get the amino acids from the formula. In other words, the formula provides all the necessary amino acids your body needs apart from phenylalanine.

Formula may have a strong odor or taste that makes it hard for some people with PKU to consume. Also, preparing, carrying and remembering to take formula on an everyday basis can be a hassle. However, without formula it is not possible to control your PKU.

Actually, formula helps you in many different ways to:

  • Get the necessary amino acids for your body to grow and develop 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 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 that you can choose one that is right for you.

PKU Formula Tips

PKU FormulaTry to make formula part of your life so that you don’t forget or don’t have time to prepare it.

Here are some ideas for reducing stress for taking the formula:

  • 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 is ok to mix some formula in advance, most formula can be kept refrigerated 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 1/2 of 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 is finished.

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.

Don't be confused! Low protein foods are not formula. They are special products, such as bread and pasta that are low in phenylalanine.

Try to keep in mind! You cannot control your PKU by only restricting phe intake. You also need the formula! Even if taking the formula regularly seems a challenge, it is worth it to make it part of your life! And now you have some more ideas of how to do that.

There are so many choices! Talk with your dietician about new products.

There are many new options for formula volume, which differ in taste and the amount you must drink.

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