Tips for Diet Management from PKU Families
Formula (Medical Food)
Preparing and Storing It
Weaning from the Bottle
Planning for Emergencies
Preparing and Storing it
(Also see Kitchen Gadgets section for formula-making "tools")
- A gram scale makes preparing formula a breeze. It only takes seconds to get the exact amount needed. (The scale needs to weigh in increments of 1 gram. The accurate Tanita brands, are available from Children's PKU Network. Or the equally accurate Ohaus brand is available from the New England Connection for PKU & Allied Disorders
- I mix formula daily in a Tupperware Quick Shake container. It's a two-cup container with a domed lid, pour spout and a removable insert to help blend the powder. It's perfect for mixing the 16 oz. of formula my daughter drinks daily.
- I weigh out dry formula for three days at a time and store it in three different pint size containers.
- I make thirty Ziploc freezer bags of pre-measured formula at a time, enough for one month. It only takes about 20 minutes to make a month's worth and saves time and fuss every time you want to make formula.
- We use the 4 oz. Rubbermaid containers for dry formula. We weigh 32 grams in each one and our son takes three per day. Just add warm water and shake. Our son also keeps one container in his book bag for those times when he finds himself running late getting home from sports activities, etc.
- Keep your measuring cup in the formula can for quick measuring.
- Ever wonder if there is anything else that could mix the formula besides a blender and have half the mess to clean up afterwards? A Braun mixer is the answer! I've used the Braun mixer while traveling across the US and Europe and it works great (young adult with PKU).
- Add ice to just-mixed formula if your child needs to have it ice cold or add ice to the blender while mixing.
- Even a young child can press the button on the blender, making him or her feel involved with diet preparations.
- Use a hand blender to mix the formula. To clean the mixing glass, add a little detergent and water and blend. Then add clean water until clear. Dry and put away until needed again.
- Ever notice how sometimes the formula can smell up your refrigerator? Or how the formula can separate in the refrigerator over night? Well, I sterilize and save pickle jars with lids to keep my formula in when I store it in the refrigerator. This way, when I get up in the morning, all I have to do is shake the pickle jar and pour a glass to drink. (This is a great way to carry formula in coolers, on road trips and camping trips.)
- Because of the form of nutrients in PKU formulas, many are oxidized in a 24 hours period after mixing. Oxidation destroys vitamins A, C and E and light destroys the vitamins riboflavin and vitamin B6. So unless frozen, medical foods for PKU should be mixed at least every 24 hours. A larger batch might be mixed and the individual amounts for future 24 hour time periods stored in opaque containers in the freezer. Only the amount for a 24-hour period should be thawed for use at any one time.
- We use Rubbermaid sippin' bottles for our son's formula, but we have scratched our own ounce markings on the bottles with a scribe since we have been unable to find a container that has ounces already marked.
- My child is quite young and still needs a covered cup. Playskool makes a "no-spill" cup that requires a good strong suck to get milk out. It really doesn't spill and is very convenient to take in the diaper bag and the car (we went from a bottle to this cup).
- McDonald's Restaurant straws are great for formula drinking. They drink faster than smaller straws. I also like to use the bend-able straws so the smell of the formula is not as strong. (Young adult with PKU)
- We have a sticker chart for drinking and finishing formula that we use for our two-year-old. I have a big shoe box full of stickers to put on when it's all gone.
- We encourage our two-year-old when he finishes a glass of formula and remind him how good his formula makes him feel. We want him to feel good about his diet and build his self-esteem.
- Realize that the formula is often filling for 2, 3 and 4 year olds. They may not eat much or want to experiment with many new foods.
- "Pretend it's a liquid you like."
- "Hold your nose and close your eyes if you have to."
- Use a straw. Large diameter straws, like those from McDonald's, drink faster than smaller straws.
- Try Strawberry Quik ("free") in the formula for a different taste.
- Mix the formula with pop and serve cold and fizzy (mix one serving at a time to retain fizziness); my son (age 12) always mixes his formula with red pop.
- Mix the formula powder with the least amount of water possible, then add pineapple juice to taste, ice cubes and a straw. We went through formula battles last year and tried everything else. Our new solution works great.
- Chocolate helps the formula go down; a little after drinking to leave a good taste in the mouth (such as almond bark's chocolate almond bark or peppermint patties).
- Ways to flavor the formulas: chocolate syrup, colas such as Sprite, lemon-lime, or coke, combined flavors such as cherry-vanilla flavor or pineapple-orange, cooking extracts such as vanilla, maple, mint, or almond, drink mixers such as pina colata, Flavonex (from Ross Products), food colors (just for a change of color!), fruit juices such as orange, grape, apple or cranberry, fruit punches or drinks such as Hawaiian Punch, instant pudding (especially lemon flavor), instant coffee crystals or international coffee flavors (but check the ingredient list), Look-aid flavors (pre-sweetened varieties work best), non-dairy coffee creamer, slushes (blending ice and juice or freezing the formula into a flavored ice), smoothies (blending with fresh fruit such as bananas or strawberries and ice, strawberry syrup (it has a stronger taste than powdered strawberry flavoring like Nestle Quik), sugar, Tang beverage powder (orange or orange-pineapple both work well). Be sure to add the extra phe for ingredients that may contain it.
- Try adding part of a banana. It can mask some of the bad taste. You'll need to use a mixer to get the banana mixed in well. Also, since the formulas can be very sweet, if you use a banana that has just ripened, it won't make the formula too much sweeter (compared to a very ripe banana that will make it much sweeter).
- Tell your child to drink all the formula so he or she can grow up happy, healthy and strong.
- Give your young child a special reward, like a great big hug when he or she finishes the formula.
- If drinking a lot of formula at once is difficult for your young child, have him or her drink a little every hour and at meals. By the end of the day, the formula should be all finished.
- Use a special glass or mug for drinking formula to ensure that the glass or mug is thoroughly cleaned after finishing formula (especially since the dishwasher doesn't always thoroughly clean the formula).
- Use SHS Phlexy-10 bars on field trip days in lieu of "milk," or whenever formula drinking is inconvenient such as at picnics or social events.
- I stress to my two-year-old daughter that her formula is good for her. She loves to jump. I tell her that formula makes her legs extra strong so she can jump higher.
- At supper, one of the other family members has a "milk race" with my three-year-old son. They race to see who is the fastest milk drinker. His sister knows how important drinking his milk is and they always let him be the proud winner who finishes first. Everyone claps and cheers.
- Try the "One page, one drink" game: If our three-year-old son still has milk to drink at bedtime, he takes one drink for every page of his bedtime story I read. By the end of the story the milk is gone!
- I call my son (age eight) to wake up and get ready for school, then I go back to bed for about 30 minutes. He then drinks all of his milk, on his own. When I stayed with him in the dining room, we always had battles over getting the milk down so he could get ready for school.
- Occasionally our toddler son balks at finishing his formula and we've found that if we take a favorite toy and tell him that the bunny, truck, duck, etc. will get excited if he drinks, he usually complies. As he drinks, we shake the toy as if it were getting excited. An even bigger response is solicited when the toy does a double back flip to show how glad they are in his drinking effort. It works for now, but our son is only two so we'll have to come up with a new approach soon.
- We sing the "milk song" which goes to the tune of "Row Row Your Boat":
"Drink drink, drink, drink your milk, grow up big and strong,
then you don't have to get poked, we'll leave your ---alone."
My four-year-old has to keep drinking her "milk" through the entire song and she gets to fill in the blank each time we sing it. For example, we'll leave your bones alone, or we'll leave your ears alone, etc. Often we can get through the entire body before she finishes! But it is easier to sing the song together than to leave her sitting at the table trying to finish alone.
- When our three-year-old daughter complains she doesn't want to drink any milk, I say "How about only half a glass," which is always OK. Then I put the same amount in a bigger glass. This is deceptive but works great!
- Our four-year-old loves to count things so we count how much she can drink. Sometimes I count or her three-year-old sister does so everyone in involved. As she drinks, we count "1,2,3,4,5" and then see how much she drank for the count of 5. Then she will try for the count of 8. So we count to 8 and see how mulch she drank. This is a fun and educational game!
- For a short time at daycare, our daughter loved to race the timer. This was to help her finish her milk more quickly (she can dawdle over her milk for 30 minutes). They set a timer and she had to finish it before the timer went off. The novelty wore off, but she now understands how to drink her milk faster.
- After 6 years of battles with formula drinking, the only advice I have is to let your child feel as if he or she is in control of their formula and diet. You can be firm, but still let them feel in control. A strong-willed child does not want to be told what to do. If you say "Drink your milk or else. . ." you had better follow through with the "or else" because a truly strong-willed child would rather pay the consequence than be told what to do. Try being firm and not letting your child feel as if he or she is backed into a corner. "Drink your milk, O.K.?" was the beginning of the end of our 6 years of struggles. Although the answer may be"no," it allows conversation to take place and does not make it "final." If the answer is "no," you can ask "why not?" and he or she will say "because ... I wish you would make it colder" (or whatever the reason). It works. It is not easy to give your child control of his or her diet but you are going to have to do it sometime. Start young!
- As a runner, my husband supplements his diet with a "protein shake" made from an over-the counter protein powder. Together, my two sons (ages 3 1/2 with PKU and 5, not PKU) each weigh and prepare their own "super protein shake" with either water or juice. We talk about how protein builds strong healthy bodies. We also enjoy health and fitness type magazines. Scanning the magazines together they love seeking out healthy looking individuals. These things reinforce the idea that a protein supplement can be good for anyone, and that the ultimate goal for all of us is to be healthy, achieved in the way that is best for each of us.
- Here are some ideas for helping with a transition from one formula to another: Go slow on the transition, adding just a small amount of the new formula (as little as 2 or 3 grams at a time if necessary), and subtracting a small amount of the old formula and then gradually going up with the new formula and down with the old formula over a period of weeks or even months. Try flavoring with Tang (orange or orange pineapple flavor), Nestle Nesquik syrup in the strawberry flavor, or non-dairy creamers (especially Carnation French Vanilla and International Delight in French Vanilla, or Kool-Aid.
Weaning from the bottle
- Here is some advice for parents who are having troubles getting their child to wean from the bottle:
- Let your child "grow out of it." This WILL eventually happen, even if not at the age you prefer.
- Tell your child another baby needs his bottle, and he or she is a big boy or girl for sharing it.
- Mix the powder with hot water first to eliminate the "grittiness" of it and then chill.
- Remove the nipple from the bottle and get him or her to use a straw in it, eventually putting the straw into a cup.
- Switch to Maxamaid Xp (flavored similar to Tang) and call it "juice" (if your child will drink juice from a cup already)
- Have a close family friend talk to him or her about switching to a cup. Sometimes kids will do things to please adults other than their parents.
- Use a sippy cup during the day and the bottle only at night. Eventually phase the bottle out.
- Our son made the transition from drinking his formula in a bottle very easily at an early age (about 10 months). We put his formula in a Rubbermaid Sippin' Saver 8 oz. cup with straw. He liked the straw and because it is clear, we could see how much he was drinking. (He still drinks his formula from this cup at age 3 1/2 year, three times a day, preferably with a special TV show or video.)
- Wean early. We took bottles away when our son was one-year-old and started using "Smile Tote"sippy cups (purchased at WalMart or Target stores). These cups hold 9 fl. Oz. And have snap down lids so they can be shaken to mix formula and easily popped in the diaper bag without spilling.
- Give your child a cup to sip from even at the young age of 6-7 months. This is help him or her to get used to the smell of the formula and to the idea that formula comes from a cup also, and not just from the bottle. Then start weaning at around age 1 year.
- I never "battled" with my son, who drank his formula out of a bottle until his was almost four years old, as long as he drank all of his formula from it. He drank everything else out of a glass, but formula was different. When the last nipple finally got a hole in it so big it wouldn't work anymore, I bought a glass with a lid and straw. The straw seemed to be the answer. Also, I use a see-through plastic glass with the word "DRINKMATE" lettered vertically up the side. This gives my son a goal to work toward (for example, morning milk has to be to the top of the "R" before school; afternoon milk has to be to the bottom of the "n" before leaving the table at snack time, etc. This ended a lot of battles when he could actually see the milk going down and knew what was expected to be consumed each time.
Planning for Emergencies
- We keep a few extra cans of formula at friends' and neighbors' houses. In case we ever have a catastrophe we at least have a few days of formula readily available. You do have to keep track of expiration dates and rotate the formula before it expires.
- We keep a small quantity of formula (and a mixing container) and low phe snacks in each car in case we're out and can't find low phe snacks or meals.
- Stash an emergency can of formula at a location other than your home, such as your office, and remember to rotate stock. I learned this when my sister-in-law lost her home (and formula) to a fire. No one wants to go looking for an emergency replacement at midnight.
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Last update: 03/01
National PKU News: www.pkunews.org