Your phenylketonuria (PKU) diagnosis is lifelong, so stay up to date with your healthcare provider and get routine blood tests to monitor the level of phenylalanine in your body.
If you are on a restricted diet, you still need to eat foods and take vitamins to make up for the lack of protein in your diet. Make sure you follow your diet for your entire life to prevent symptoms that could be dangerous to your health.
If you plan on becoming pregnant, talk to your provider about genetic testing to understand your risk of having a child with a genetic condition.
When should I see my healthcare provider?If you or your child develops symptoms of phenylketonuria, contact your healthcare provider for a thorough evaluation.
Before becoming pregnant or during your first prenatal examination, you can ask your doctor about testing (called carrier screening) to determine if you and your partner are at risk for having a child with PKU.
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If you have PKU, visit your provider for regular blood tests to monitor your condition.
What questions should I ask my doctor?How do I make sure my baby gets enough nutrients to stay healthy?Do I need to take any vitamins or supplements?Is a low-protein diet enough to reduce my phenylalanine levels or do I need medication?A note from Cleveland Clinic
Early during a diagnosis, it may be difficult to choose foods that don’t contain phenylalanine. Work closely with your healthcare provider and/or a dietitian to help you create a diet that's full of essential nutrients while eliminating phenylalanine. PKU is a lifelong condition, and staying regular with your diet and appointments to check the phenylalanine levels in your blood makes positive, lifelong habits that lead to good health.