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Away from Home
PKU lessons for your child's teacher
Help your child's teacher understand PKU. Download a brochure that provides important information that a teacher, babysitter, or other kind of caretaker needs to know about PKU and the low-Phe diet before watching over your child.
Once your child enters school, sticking to a low-Phe diet may be more difficult for him or her. Trading that apple for a PB&J sandwich is very tempting. That's where your child's teacher can help.
The teacher plays an important role in reinforcing your child's diet. The teacher can:
- Notify you of class parties where food will be served
- Make sure that your child takes home all uneaten food from lunch so they can be recorded in the food diary
- Enforce a class policy against food trading
- Make sure your child eats the food you provided
Give your child's teacher a note as a friendly reminder about your child's special dietary needs. Together, you and your child's teacher can help keep your child on the low-Phe diet with as little cheating as possible.
Sick days and PKU
What should you do when your child gets sick?
- While Phe levels are likely to rise during the illness, this elevation is most likely temporary
- Treat the illness first
- Your child may or may not have an appetite. However, don't force your child to eat
- Keep your child hydrated. Water, fruit juice, low-protein gelatin, and low-protein broth are good choices
Ask your doctor or dietitian what other steps you should take during your child's illness.
Travel Tips
Plan ahead. Whether your child is going across town or on a vacation, these travel tips may come in handy.
- Pack your child's medical foods and KUVAN tablets in a carry-on bag, along with a doctor's note for both
- Bring a cooler with ice to keep your child's Phe-formula cold during short-distance trips
- Find out as much as possible about the place your child is 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 your child can alternate between eating meals out and having some "homemade" meals in your room
- For longer stays, find out where you can buy your child's low-Phe foods in the area
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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.
