PICNIC TABLE TALK: MANAGING THE PKU DIET FOR KIDS IN SOCIAL SITUATIONS

Transcription

1 PICNIC TABLE TALK: MANAGING THE PKU DIET FOR KIDS IN SOCIAL SITUATIONS Meg Stone, MS, RD, LD Jessica Williamson, MS, RD, LD Emory University, Department of Human Genetics

2 Disclosures We have no disclosures to report

3 Objectives Understand the 3 components of the PKU diet and their individual roles in PKU dietary management Highlight the importance of tracking daily dietary PHE/protein intake and identify resources for both parents and children to aid in counting Discuss the purpose of PHE level monitoring and how results are used to tailor dietary recommendations Identify possible barriers affecting dietary compliance in social settings and explore possible solutions

4 DISCUSSION: PKU DIET IN SOCIAL SETTINGS What works well and not so well?

5 3 COMPONENTS OF PKU DIET Formula Fruits Vegetables Low-protein modified foods, grains, starches, etc

6 1. Formula/Medical Food Role of formula in PKU diet: Provides majority of protein in diet while supplementing tyrosine and restricting phenylalanine May provide vitamins and minerals (not all formulas provide these) Provides calories for energy Importance of drinking formula: Helps control plasma phenylalanine concentrations Essential for brain function and cognitive development Prevents protein malnutrition due to dietary protein restriction Types of formula: Powdered Ready to drink (RTD) Combination of both powdered and RTD

7 2. Low-Protein Modified Foods (LPMF) Role of LPMF in PKU diet: Promotes satiety Provides calories to meet child s energy needs Does not contribute a substantial amount of PHE to child s PHE allowance LPMF in Social Settings: Many LPMF options are similar to regular starchy foods, making substitutions easier Breads & buns Tortillas & pitas Baking & all purpose mix Regular & hot breakfast cereals Pancakes & waffles Cookie dough Pasta Rice Pizza crust

8 3. Other Foods Low in Protein What are other foods low in protein? Primarily vegetables and fruits Also includes gluten-free foods and dairy-free products Inclusion of these foods varies depending on PHE goal These are the foods counted toward daily PHE goal Daily dietary PHE intake should not exceed prescribed daily PHE goal Can usually be found within your local grocery store or supermarket Role of other foods: Provide some phenylalanine needed to promote growth Provides vitamins, minerals, and fiber

9 EMPOWERING YOUR CHILD TO MONITOR PHE INTAKE

10 Daily PHE/Protein Counting Resources: 1. HowMuchPhe (subscription required) 2. Applications (Accugo, MyFitnessPal) 3. Books/Pocket Guides (PKU Food List, HowMuchPhe) 4. Nutrition Facts Labels (available on all packaged foods, unavailable on produce)

11 Grocery Store Scavenger Hunt Have your child help compile a list of food items <1 gram of protein per serving found in the local supermarket or grocery store Tackle an aisle at a time to make collecting information less overwhelming Use this list as a reference guide for your family and friends providing snacks in various social settings Emory Genetics, 2016

12 Stoplight Game for Counting PHE in Foods Go Foods Rule of thumb: foods low in protein/phe and typically make up the bulk of the diet Caution Foods Rule of thumb: need to be consumed in limited quantities Stop Foods Rule of thumb: contain a large amount of protein; should not be consumed as they are not suitable for the PKU diet Disclaimer: May still need to be counted toward PHE goal if eaten in large quantities Disclaimer: Typically contain >1 gram of protein/serving and always need to be counted toward PHE goal Disclaimer: Inclusion dependent upon individual PHE tolerance and response to concurrent PKU drug therapies Disclaimer: inclusion of caution foods dependent upon individual PHE allowance

13 Stoplight Game for Counting PHE in Foods Go Foods Fruit: Apples, berries, clementines, grapes, grapefruit, jack fruit, kiwi fruit, lemons, limes, mango, melon, nectarines, papaya, peaches, pears, pineapple, plum, pomegranate, rhubarb, raisins. Vegetables: Artichoke, baby corn, green beans, cabbage, carrots, cassava, celery, cucumber, garlic, lettuce, mushrooms, onion, all herbs, peppers, pumpkin, squash, sweet potato, tomato Fats: butter, vegetable fat and oils Misc: sugar, icing (except chocolate), jam, honey, syrup, marmalade LPMF Caution Foods Potato products Spinach Spring greens Peas & beans Corn & popcorn Kale Asparagus Broccoli Brussels Sprouts Cauliflower Plantain Bananas Figs (dried) & dates Stop Foods Meat: beef, poultry, pork, etc. Fish Eggs Dairy products Cheese products, including spreads Nuts & seeds Flour-based foods: bread, biscuits, buns, cake Tofu Aspartame : E951, E962, Aspartame-Acesulfame-K

14 Stoplight Challenge Activity Jessica s Stoplight Foods Go Foods Caution Foods Stop Foods Apple Orange Pineapple Cabbage Cucumber Grapes Jam Syrup Banana Asparagus Broccoli French fries Gluten-free bread Gluten-free waffles Peas No stop foods allowed; PHE goal = 400 mg Step 1: Pick out 20 most frequently consumed foods Step 2: Have your child look up protein or PHE content of each food using a trusted resource Step 3: Categorize foods into 1 of the 3 stoplight categories Step 4: Update as necessary if new foods are incorporated into the diet

15 TEACHING YOUR CHILD THE IMPORTANCE OF MONITORING PHE LEVELS

16 Monitoring Regular PHE levels are needed to adjust diet appropriately When should we submit blood work? As recommended by your local clinics (weekly, monthly, more often with levels outside treatment range) Also when you observe changes in behavior, concentration, etc. (create open dialogue with child to discuss feelings toward school work load; observe child completing homework if possible) What if my child doesn t like providing samples? Set up appointment with local outpatient lab to have blood drawn as scheduled Are food records really necessary? Yes. Food records allow your child s dietitian to identify potential foods contributing to high PHE levels

17 TIPS FOR PKU DIET MANAGEMENT IN SOCIAL SETTINGS

18 Birthday Parties Prepare Reach out to the host ahead of time and discuss a plan to serve alternative PKU diet friendly snacks or desserts Review the stoplight system with your child Provide your child with a notebook so that he or she can write down what is consumed Execute Depending on what is being served, prepare low protein modified cupcakes or cake to be served alongside the regular dessert Resources NPKUA PKU Information for Adult Friends of the Family NPKUA PKU Information for Friends of a Child with PKU NPKUA PKU Information for Daycare Providers and Teachers

19 Dining Out Prepare Speak with management ahead of time to discuss menu items, preparation details, and available substitutions Have your child review the menu online and determine what items are PKU diet-friendly Decide what items will need to be substituted with LPMF Execute Bring unprepared or prepared low protein modified rice, tortilla, or pasta to pair with PKUfriendly dishes or a combination of sides If restaurant is unable to prepare LPMF, bring prepared in microwavable containers to restaurant and ask for it to be served on the child s plate with the rest of the meal Resources NPKUA My PKU Binder: Chapter 10 Dining Out and Other Tips

20 Sporting Events Prepare Discuss your child s dietary restrictions with other parents responsible for providing snacks Have your child help prepare a list of PKU diet-friendly post-game snacks, such as fruits, applesauce, etc. ( Green Light Go Foods ) Review the stoplight system with your child Execute If all or part of the scheduled snack is not PKU diet-friendly, pack a low PHE snack in your child s sporting bag Pack formula in an insulated bottle for longer games or tournaments Resources NPKUA PKU Information for Adult Friends of the Family NPKUA PKU Information for Friends of a Child with PKU

21 Sleepovers Prepare Reach out to the host ahead of time and discuss a plan to serve alternative PKU diet friendly dishes and snacks Suggest meals that can be easily modified to reduce PHE intake, such as build-you-own personal pizza Review the stoplight system with your child and appropriate portions of yellow light foods Provide your child with a notebook so that he or she can write down what is consumed Execute Depending on what is being served for dinner, prepare or send LPMF, such as pizza crust, shredded cheese, mixquick, tortillas, etc. Depending on what is being served for breakfast, prepare or send fruit and LPMF, such as mixquick, for pancakes or waffles Resources NPKUA PKU Information for Adult Friends of the Family NPKUA PKU Information for Friends of a Child with PKU

22 GAME TIME Using the scenario on your table, create a PKU-diet friendly alternative to prepare for the described social situation

23 THANK YOU!

24 Resources NPKUA My PKU Binder - National Centre for Inherited Metabolic Disorders- National Society for Phenylketonuriahttp:// Cambrooke Therapeutics- Nutricia North America- Vitaflo- Abbott- Emory Metabolic Genetics and Nutrition Program- HowMuchPhe-