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Phenylketonuria Discharge Instructions

doctor. ‚  

What drugs may be needed?


Your doctor may order diet supplements. You may need to take things like fish oil, iron, or carnitine. ‚  

Will physical activity be limited?


You should not need to limit your childs physical activity. ‚  

What changes to diet are needed?


It is important to strictly follow the low phenylalanine diet, especially during the growing years. Doctors advise that people with PKU stay on it for their whole life. This will lead to better physical and mental health. Foods to avoid are: ‚  
  • Milk, cheese, and other dairy products
  • Meat (beef, chicken, pork, turkey, lamb)
  • Seafood
  • Eggs
  • Artificial sweetener (aspartame)
  • Nuts
  • Soybeans
  • Beans
  • Sesame seeds
  • Peas
  • Chocolate
  • Beer
  • Regular bread
  • Regular noodles
  • Porridge
  • M ƒ Όesli

What problems could happen?


  • Long-lasting brain damage
  • Behavior problems and hyperactivity
  • Low IQ
  • Anxiety or low mood
  • Delay in development
  • Seizures, jerking movements, or tremors
  • Skin rash
  • Stunted growth
  • Small head size
  • Low bone density
  • Vitamin deficiency
  • Hands stay in an odd position

What can be done to prevent this health problem?


  • Women with PKU who are pregnant need to follow a strict low phenylalanine diet. Even if the baby does not have the gene defect, high phenylalanine levels in the mother can damage the baby.
  • An enzyme test for parents can show if the parents carry the defective gene. Parents can also talk with the doctor about their risk of having another baby with PKU.
  • A test done during pregnancy, called chorionic villus sampling, can show if a baby has PKU before birth.

When do I need to call the doctor?


  • Seizures, jerking movements, or tremors
  • Delay in development
  • Behavior problems or hyperactive
  • Skin rash
  • Health problem is not better or your child is feeling worse

Teach Back: Helping You Understand


The Teach Back Method helps you understand the information we are giving you about your child. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚  
  • I can tell you about my childs condition.
  • I can tell you what changes I need to make with my child's diet and drugs.
  • I can tell you what I will do if my child has seizures, behavior problems, or a delay in development.

Where can I learn more?


March of Dimes ‚  
http://www.marchofdimes.com/baby/birthdefects_pku.html ‚  
National Organization for Rare Disorders ‚  
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/65/viewAbstract ‚  
NHS Choices ‚  
http://www.nhs.uk/conditions/phenylketonuria/pages/introduction.aspx ‚  

Consumer Information Use and Disclaimer


This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care providers advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚  

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