Are you a healthcare professional?

Yes   No


Your name:
Your email:
Friend's emails:
(multiple emails separated by comma)
Your message:
 
Information for Patients & Caregivers
|

Things to Know

Managing Your Child's PKU

Ordering KUVAN


Patient Support & Assistance Programs


Community

Search

Share

Find & Visit a PKU Clinic

Visits to the PKU Clinic

Regular visits to a PKU clinic are important to your child's normal development. Think of the clinic as your partner in helping you manage your child's PKU.

Find a PKU clinic in your area

What you'll find at the PKU clinic

  • Dietitians to help you recognize which foods are low and high in Phe. They will help determine the amount of Phe your child can handle. This is called Phe tolerance

    You will learn to keep a food diary to track the amount of Phe that your child consumes each day. Dietitians may assist you with menu planning as your child's nutritional needs change.

    Depending on your child's age and treatment goals, the doctor or dietitian may suggest adding KUVAN to the low-Phe diet. KUVAN may help lower Phe in your child.

    Learn more about KUVAN

  • Educational classes geared toward specific age groups for children. The classes help your child identify foods that are high and low in Phe content

    As your child grows, he or she will learn to take an active role in choosing and even helping to prepare low-Phe meals. Such participation increases the likelihood that your child will stick to the low-Phe diet.

  • Doctors who measure your child's physical and mental growth and prescribe treatment for PKU
  • Genetic counselors who educate and support patients and their families regarding inherited diseases
  • Nurses who may take vital signs, interview you about your child's health since his/her last visit, draw your child's blood, and help coordinate your child's care
  • Support from other parents who have children with PKU. You will become part of the PKU community, where you can share your experiences with others like you
Diet & KUVAN

Indication

KUVAN® (sapropterin dihydrochloride) Tablets are 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 low-Phe 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 your diet and blood Phe levels 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.


This site is intended for use by U.S. residents only.

KUVAN® is a registered trademark of BioMarin Pharmaceutical Inc. Developed in collaboration with Asubio Pharma Co., Ltd.
©2010 BioMarin Pharmaceutical Inc. All rights reserved.