Guide to PKU - Mead Johnson Nutrition

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How Will We Manage PKU?The PKU DietYour child’s special PKU dietis extremely important. Withoutdietary treatment, your child couldbecome severely retarded. Withcareful dietary treatment, yourchild can be healthy and developnormally.In the PKU diet your child willbe on, foods that contain proteinand are, therefore, high in phenylalanine(Phe) are typically excludedfrom the diet. These include cow’smilk, meats, eggs, cheeses, nuts,peanut butter, soy drinks, and tofu.Instead, your child’s diet will consistof a prescribed special medicalfood and low-protein foods.This prescribed special medicalfood is essential since protein andits component amino acids areneeded for normal growth anddevelopment. Nearly all proteinsare high in phenylalanine. Becausea person with PKU can’t breakdown phenylalanine to tyrosine,regular food protein will causethem to have too much phenylalanineand not enough tyrosine intheir blood. Therefore, infants andchildren need a protein source freeof phenylalanine but high in tyrosine.The special medical foodhas little or no phenylalanine, ishigh in tyrosine, and provides agood source of vitamins andminerals. Your metabolic clinicteam will prescribe the appropriatespecial medical food for your child.Because each child has a uniqueabsolute requirement for phenylalanine,the metabolic clinic teamwill prescribe a diet tailor-made foryour child. The prescribed specialmedical food, such as a dietarypowder from the Phenyl-Free ®family of special medical foods, isthe mainstay of management ofPKU. The metabolic clinic teamwill work with you to make sureyour child gets the appropriateamounts of special medical foods,as well as other foods, as your childgrows and develops. It is vitallyimportant for your child’s growthand mental development to followthe metabolic clinic’s direction onfeeding your child.Your child’s needs changeduring growing up. The metabolicclinic team will help you design adiet to provide all the calories,phenylalanine, protein, vitamins,and minerals your child needs togrow. The special medical food willnot supply all your child’s needs.As your baby grows and begins toeat solid foods, foods such as fruits,vegetables, and low-protein pastaswill be added to the diet. Thevariety of foods and dishes yourchild can enjoy is quite large.Recipes have been developedalready by other parents ofchildren with PKU. The metabolicclinic team will help you find theserecipes and ingredients.The diet for PKU is quitesimple to prepare once youunderstand what your child canand cannot eat. The metabolicclinic team will teach you how toplan your child’s daily meals. Theywill ask you to keep careful recordsof how much your child is eatingin order to balance this intake withthe amount of phenylalanine andprotein needed for growth andmental development. For yourchild to develop normally, the dietmust be maintained consistentlyand accurately. The metabolicclinic team will work closely withyou to help you in this goal.Regular Clinic VisitsMuch of your child’s treatmentfor PKU may occur at a clinic thatspecializes in this disorder, and youwill be asked to bring your childwith PKU to the clinic regularly.Your baby’s pediatrician will getreports of the clinic’s dietinstructions and your child’s bloodresults. In general, PKU clinicsdon’t handle illnesses unrelatedto PKU or give routine baby shots,so it’s important for you tohave a primary care provider or8
pediatrician for your baby’s othermedical care. The PKU clinic teamcan help you find a local pediatricianif necessary.The PKU clinic team willregularly need information sochanges in the diet can be madeto match what your child needsto grow and develop normally.This information includes recordsof your child’s food and specialmedical food intakes, height, andweight. The clinic will also wantto measure blood levels of phenylalanineregularly to make sure thatyour child has every chance ofnormal development. These visitswill give you an opportunity todiscuss any questions you may havewith the metabolic clinic’s team,and the team to share with you thelatest information on PKU.Just as in the treatment of anydisease, doctors and nutritionistsvary in their procedures for managingphenylketonuria. A particularclinic may differ from the followingdescription, but there willprobably be many similarities.First Steps in TreatmentFollowing the initial positiveresult for PKU, your baby will bestarted on a diet very low inphenylalanine to get his bloodphenylalanine level down quickly.This may take several days. If youare breastfeeding, the metabolicclinic doctor will ask you not tobreastfeed your baby during thistime. However, you are encouragedto continue breastfeedingyour child after his blood phenylalaninelevels are lowered, if youwish. Your baby’s metabolic clinicteam will help you plan a diet thatincludes breast milk.Next, your baby will be put ona prescribed diet, and blood levelsof phenylalanine will be checkedfrequently to be sure they aren’t toohigh or too low. Growth anddevelopment will be carefullyfollowed as well. Frequent visitsto the clinic will be required tosee how your baby is progressing.Many PKU clinics have ateam approach, and you may haveappointments with several membersof your baby’s treatment teamon the same appointment day. Thenutritionist will probably be yourprimary contact—he or she willmonitor the therapy, adjust thediet prescription as necessary, andprovide advice when problemsarise. A physician will examineyour baby and help with problemsolving.A nurse will weigh andmeasure your child to be sure thediet is meeting growth needs. Asyour child gets older, a psychologistmay evaluate him periodicallyto make sure his psychologicaldevelopment is normal. A socialworker or counselor may meet withyour family to help you adjust toliving with PKU.The services the clinic providesare essential to you to maximizeyour child’s development. Be assuredthe clinic team members are veryinterested in the health and developmentof your child. You willwant to work closely with them inorder to assure your child’s maximumprogress. This will includekeeping accurate records of yourchild’s food and special medicalfood intake, cooperating with theclinic in getting the required numberof blood tests, and keepingclinic appointments. Providing therequested blood test, keeping clinicappointments, and following theclinic’s diet for your child areessential. The healthy developmentof your child depends onthese steps.9
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Page 3 and 4: Table of ContentsIntroduction 4What
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