PKU Goes to School
Control Starts in the Kitchen
Travel Tips
Find a PKU Buddy

Independence. It means you’re getting ready to take charge of your life. It also means that you’re making more and more of your own decisions, including some about how to manage your PKU.
However, your commitment to a Phe-restricted diet must remain a priority. KUVAN is a prescription medication taken once a day in addition to your Phe-restricted diet and may help you stay on top of your Phe levels, no matter how busy your life gets.
Learn more about KUVAN.
Tackling the cafeteria
If you can’t (or would just prefer not to) bring your own lunch to school, keeping your Phe levels under control can be done even when you’re eating at the school cafeteria. All it takes is a little preplanning.
Before the school year begins, you and your parents should meet with the food staff. Tell them about PKU. Bring the low-protein food list, cookbooks, formula, low-protein foods, and a sample PKU diet diary to the meeting. With these materials, you can let the food staff know what foods you are able to eat and figure out when these foods may be available.
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Cooking for yourself
As you start making more of your own decisions, it’s a good idea to learn how to cook for yourself. That way, when you get older, you’ll already have some cooking experience.
Looking for a good PKU-friendly recipe? Visit PKU.com for great low-Phe recipes that will prove that managing PKU can still be delicious.
Divide—and conquer
Conquer the urge to splurge by having your low-Phe food within easy reach:
- Divide the freshly prepared food into appropriate portion sizes.
- Store individual servings in plastic containers.
- Don’t forget breakfast. Premeasure your favorite cereal, then store it in plastic sandwich bags for quick breakfasts throughout the week.
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Hit the road
Whether you’re traveling across town for a football game or journeying abroad to study for a semester in Spain, these travel tips may come in handy.
- Pack your medical foods and KUVAN tablets in your carry-on bag, along with a doctor’s note for both.
- Bring a cooler with ice to keep your Phe-formula cold during short-distance trips.
- Find out as much as possible about the place you’re visiting, especially if it’s a foreign destination. How clean and safe is the water? Will you be able to keep your formula cold?
- Stay in hotels with a microwave and fridge. That way you can alternate between eating meals out and having some “homemade” meals in your room.
- For longer stays, find out where you can buy your low-Phe foods in the area.
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Get support from someone who understands
Even with all the tips and helpful advice, you may still find yourself struggling with your diet once in a while. That’s when a PKU buddy can help. Chances are he or she has experienced the same things as you. This person can give you support and encouragement to help motivate you to stay on diet.
You might find your PKU buddy at school or just by visiting a PKU Web site. For instance, visit PKU.com to share your experiences with others just like you. When you register, you can join discussions, create a profile, and meet other people your age who have to deal with PKU every day—just like you.
Who knows? The support and encouragement you and your PKU buddy give each other may make a big difference in both your lives!
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Indication
KUVAN® (sapropterin dihydrochloride) Tablets is approved to reduce blood Phe levels
in patients with hyperphenylalaninemia (HPA) due to tetrahydrobiopterin- (BH4-)
responsive Phenylketonuria (PKU). KUVAN is to be used in conjunction with a Phe-restricted diet.
Important Safety Information
High blood Phe levels are toxic to the brain and can lead to lower intelligence
and decrease in the ability to focus, remember and organize information. Any change
you make to your diet may impact your blood Phe level. Follow your doctor’s instructions
carefully. Your doctor and dietitian will continue to monitor and may adjust your
diet throughout your treatment with KUVAN.
If you have a fever, or if you are sick, your Phe level may go up. Tell your doctor
and dietitian as soon as possible so they can see if they have to adjust your treatment
to help keep your blood Phe levels in the desired range.
KUVAN is a prescription medicine and should not be taken by people who are allergic
to any of its ingredients. Tell your doctor if you have ever had liver or kidney
problems, are nursing or pregnant or may become pregnant, have poor nutrition or
are anorexic. Your doctor will decide if KUVAN is right for you. Tell your doctor
about all the medicines you take.
The most common side effects reported when using KUVAN are headache, diarrhea, abdominal
pain, upper respiratory tract infection (like a cold), throat pain, vomiting, and
nausea.
To report SUSPECTED ADVERSE REACTIONS, contact BioMarin Pharmaceutical Inc. at 1-866-906-6100, or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please read the full Patient Information by clicking here.