Returning to Diet - NPKUA

1 BasedonInput fromAdultswit h PKU ofallAges orgReturning to diet :MANAGEMENT TIPS & POINTERSFROM ADULTS WITH PKUPKUA dult Possible by a Generous Donation fromArt and Catherine Higgins, parents of two late diagnosed PKU childrenComplied by Annaliese Martinec, Graphics By Kinnon Martin By re tur ning todietortighteningyourcompliance wit h thediet,youhaveCongratulations ontakingthisimportantstep towardsmanagingyourPKU!Congra tulationsontakingthisimportantst eptowardsmanagingyour PKU!chosena paththatwillleadyouto a more healthyand weretheonlyonewithPKUontheplanetgrowingu p,butyou arenotalone. Onepersoninevery15,000 AmericanshasPhenylk etonuria(PKU).Chancesare,thereis AllianceAdultProgramis edbyadultswithPKU,fo radultswit h PKU,and,especiallyforadults likeyouwhoaretryingtoreturntothePKUdieta ry simplereminderofhowandwhytofollowa PKUtreatmentplan.

2 Youwill findshort,simple notesfromotheradultswithPKU, bothdietforlifersandreturningtodieters, thatcanhelpyou withyourre turn A PlanThefirstthingtoknowis thatthereis a managementplan,andthatit a timewhendoctorsbelievedit wasoktotakepatients chnowshowsthata treatmentplanshoul d becontinuedfo r lif LJ LJ W<h LJ W< h goes e treatmentmethodshavechangedovertheyears, physicianscurrentlyre commenda lif estylethatinvolvesa dietof foodsthatarelowin LJ W, acids withoutPHE,andregularcontactwit h a di ,butthemajorityoftheon-dietPKUcommunityf ollowssomevariationofth e lowproteindietand medicalfoodtr 1 Phenyl ketonuria (PKU)is a geneticmetabolicdi sorderinwhichenzy mesinyourliver donotbreakdowntheaminoacidPhenylalanine( PHE) a partofpr otein,whichis thelonglastingenergyinfo dsToKnow:Enzymeshelpth e (PHE)is oteinis buildingmaterialfo r yourbody; a sourceof LJ njLJ W, LJ LJ travel s toyourbr ,unbrokenPHEcancauseharmtoyourbrain thatshows ina numberofways.

3 Mostcommon:depression,anxiety,headaches, fferentpeoplehavedifferentlevelsofenzyme activity,sodifferentpeople experi encedi / / & Many peopledonotnoticetheeffectsuntil someonetalkstothemaboutthedifferent signsandsy mptomsofnot foll owingthe treatmentplanor untiltheirPHElevel s comedownandtheycanfeelthedifference g back attheirtime offdiet,somepeopledescribeit asbeingina dietplan thatinvolvesfo odsthatarelowinproteinhelps yourbodymanage theamountofPHEit hastobreak mulais usedto LJ LJ W, Reminder:WhatIs PKU?Followinga dietplan thatinvolvesfo odsthatarelowinproteinhelps yourbodymanage theamountofPHEit hastobreak mulais usedto LJ LJ W, 2**VERY Important Note For Women**Women who wish to start families should be very careful to follow the diet rules before even starting to try to conceive, while trying to conceive, and while pregnant.

4 This is very important to the health of the (s ki n rash)xHyperactivityxEasilyconfu sedxParanoiaxCrying spell sxDiff icultywithselfcontro lxDiff icultywitheveryday tasksxLackofwil lpowerxLosing wordswhen speakingxFeelin gsofhel pl ess nessxFearofcrowded pl acesxConsta ntsleepiness, lackofenergyWithtreat mentyoucanovercome of thesesoundfa mili ar?Sy 3 When first retu rnin g to diet , it is important to vis it a metabolic center t hat specializes in PK U because they wi ll hel p you set and then reach your PKU goals. They ca n monitor the amount o f PHE in your blood to find your PHE toler ance, hel p you find the best medical food for y our needs, an d prov ide guidance.

5 Your Phenylalanine tolerance is the amount of PHE that your body can han dle each day. 1. Keep a diet record of e veryt hing you eat for three days. L ook at the example of a breakfast be ea ng. They are not there to judg e you and will be a ble to help you 2. Hav e your blood drawn on th e fourth day and sent in to a lab that can test for blood PHE leve l. Your clinic will help you ar range The res ults will be se nt to your clin ic, where it will be reco rded and sha red with you by phon e or email. You may need to repe at this process a few mes so your die cian and physician can provide you with an accurate PHE tolerance.

6 Most clinic srecommend that you hav e your PHE lev els checked at lea st once a month so you can be sure eve ryth ing is und er cont rol and to monito r how your levels Date/M eal Quantity PHE Protein FoodDescriptio n Tuesday Breakfast 2 scoops0-- PKUformula mixed in water 1 cup 6 !ee 1 tbs dairy liquid co!ee creamer 150apple3303-inch wide Mixquick Pancakes 2 tbs 0 0 syrup y To tals Three Steps To Be!er PKU Management, Step 1: Clin ic respond to changes in your !/ LJ fo rmula," "milk," or "proteinshakes d goals arethesa me- LJ LJ peoplewithPKUit justhappenstocome ina di fferent needstoeateveryfewhourstomaintain energy,soit makes senseto food,fo rmulaworks bestwhenconsumedoverthecourseoftheday, : Followinga lowPHEdietbutnot takingformul a GetIt ?

7 Talkto your PKUdietitianaboutyourhealth ia n shouldbeabletosendyoufree samplesofdifferenttypes offormulathatfi t bothyour nutritionalandpersonalneeds. Pick oneyou like,andstickwithit ., K , LJ The fi rstPKUformulawasintroducedin1951:Lof wasdesignedtosupplementth e proteinneededduring childhood,but many doctorshadtheirPKU patientsst lo t ofres earchto around 1980,whendoctorsbeganprescribingthePKUdi etandmedical foodasa lifelongtreatment. Medicalfoodoptionswerefewatbest,andwered efinitely notcreatedfortheir rmulashaveimprovedgreatlywith timeand effort,thankstothehardworkanddedicationo fthePKUprofessionalandvendor : MakeFriendsWithYour 5I Tried This When I Wa s A Kid.

8 It Did Not GoWe are that you r emember the old medical foods and are hesitant to t ry anew one. F ortunately, medical technology and flavor has imp roved in the past 50 years. So pick the formula style that best suits your nut ri onal needs, and cheers to asuccessful P KU diet ! Types Of Medi cal Foods Formula has c ome a long way. For a long me our only cho ice was powder in acan but now we hav e be" er powder in a can, powder in sin gle servi ng p ackets, pills and tablets, bars , and even ready-to-drink pouche s and juic e boxe s! It comes in many flavors, too: lemon, orange, tro pica l, berry, vanilla, and eve nchocolate. Lots of people also choose unflav ore d for mula and add their ownflavoring.

9 Step 2, Con nued: For mulaTips And Tricks wSuggested Flavorings:Kool aid with sugar o r Splen da, Tang, lemonade mix, Mi o liquid water enhancer, iced tea, iced c off ee, m easured amounts of rice milk, or juic e. There are a number of flavorings on the market now as well, just be sur e to watch out for *a spartame!Mix exactly how much you need for e ach meal. Mix enou gh f or the whole day in one bo"le and keep it cold in a ref rigerator or cooler. Most types can be made ahea d of me and kept fro zen for a few day s. Ke ep an extra packet and bo"le of wat er in your backp ack,brief case, or pur se. Most types of formula can not be heated up, beca use they will brea k down.

10 *Watch out for the ingredient Aspartame. It should be avoided by people with PKU because it is made from Phenylalanine. When facing the colored sugar packets in restaurants, reme mber the blue one sare made with aspartame. The others are generally sugar safe Sugar pink sacc harin safe yell ow sucr alose safe Splenda blue aspartame NOTSAFE Equa lStep 2, Con nued: For mulaTips And Tricks w6 Peopl e with PKUmustavoid foods thatarehi ghin proteinlike meat,fish,poultry, dairy,soy,legumes(driedbeans) vegetablesarehig inalmosteverythingexcept sugar,salt,oi l, ,manyfruits andveget ablesarenaturally out toeatto o greenhavelessthan 20mgPHEin a 1 eatfo yellowhave21-50gPHEper 1/2cupse have51-115mgPHEper1 ^ LJ W, LJ LJ check a PHE listto If I MissHighPr oteinFoods?