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Category Archives: Diet-for-Life (Adult Corner)

PKU is Diet-for-Life. It’s Never too late to return to the PKU diet plan. Learn more about other PKU adults and how they returned or remained on the diet diet. Also learn about new PKU formulas and recipes to help keep the diet fun and interesting.

Flying with Formula – Tips for your Next Trip

Flying with Formula – Tips for your Next Trip

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If you are planning a flying vacation, before you book, contact your airline’s customer service department to notify them of your travel requirements as soon as you can.  Airline policies regarding travelling with metabolic formula will differ so it is worth checking with a customer service representative before you arrive at the airport.

Airplane food is generally not PKU or low protein diet-friendly so you may need to pack (or purchase prior to boarding) any food or snacks you think you might need during the flight.

If you are booking an international flight you will need to order a special meal. Please note that even meals listed as low-protein or vegetarian/vegan may not be low enough in protein for the PKU diet, so explain your dietary requirements clearly.

Airline Tips

  • Always take a travel letter from your clinic explaining your medical condition, especially for international travel

  • Always pack extra PKU or metabolic formula in your carry-on bag in case of delays

  • Do not mix PKU or metabolic formula powders with liquid until you go past the security screening checkpoint

  • Keep your PKU or metabolic formula in its original sealed containers (packages, cans or sachets)

  • Take a copy of your child’s diet prescription with you

  • Take plenty of snacks for the flight

Useful PKU Traveler’s Tip

  • It may be useful to switch to a powdered PKU or metabolic formula when travelling abroad, to reduce your overall luggage weight. However, ready-to-drink pouches that don’t require mixing are also particularly convenient when traveling. Contact your dietitian for more information on these options

  • If you are traveling overseas, ask your metabolic healthcare professional team for information on where low-protein food supplies can be obtained in your destination country

  • If you are shipping your PKU or metabolic formula or food to a hotel prior to your arrival, be sure to label the box clearly with your name and arrival date on the package. Call and alert the hotel that a shipment will be arriving for you.

*Reference Source: My PKU Binder. National PKU Alliance. Chapter 11: Traveling, Page 88-89.

Nutricia’s Top 10 PKU Formula Options for Adults

PKU is Diet-for-Life. Get back on track and find a PKU Formula you can enjoy drinking. 

Nutricia Metabolics is proud to offer the largest selection of PKU formulas and flavors.  Nutricia also offer free samples* so you can see which product and flavor is best for you.

Top 10 PKU Formulas for Adults

Try 1, try them all!

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Request a FREE product sample direct from Nutricia at www.medicalfood.com

 

*All samples are verified with a metabolic healthcare professional prior to shipping.  All PKU formulas must be used under medical supervision.

Top 10 Reasons to Add Phlexy-10 Tablets to your PKU diet Plan

Phlexy-10 Tablets

10. You can take tablets at night instead of skipping that last serving of formula

9. Easy to take at school before sports practice or other activities

8. Tablets won’t smell up your locker or work area

7. Lightweight PKU protein source when hiking or camping

6. A simple way to stay on diet when you just don’t like PKU protein drinks

5. Prevents having to explain about your special drink each time you eat with new people

4. Tablets can add flexibility to a busy day

3. Easy to pack or carry when away from home for long periods of time

2. No messy liquid spills in your bag or purse

1. A quality PHE-free protein source for times when you just don’t feel like drinking your ‘special milk’^

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Don’t Skip Your Last Serving of PKU Formula!

Talk to your Metabolic Dietitian Today!

 

*You must consult a physician or dietitian prior to making changes to your PKU diet plan.

^ ‘Special Milk’ is a common term used for PKU formula or PKU Medical Food

Low Protein Food – Buy Direct from Nutricia!

There are a growing number of options when it comes to low protein food.  One of your options includes buying direct from the company, which could add up to a cost savings for you.

For example, Loprofin brand pasta by Nutricia is available online in more than one place, but buying direct from Nutricia’s website www.medicalfood.com provides up to a $2 per box savings per box compared to other online low protein food shops when purchased by the case.*  This can up to BIG savings when buying 6, 12 or 24 boxes in one order.

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Quantity per unit is also another important item to explore.  Some products may appear similar in nature and have the same cost per unit.  But with a closer look you may see that one product unit may only provide 10 oz  while the other supplies 16 oz.  You want to compare you prices by ounce or gram to determine the best value for your money.

Next time you are ready to place a low protein food order, compare the volume and cost.   Also consider buying direct from the company and registering on their webistes for special offers and promotions.

 

Written by Sandy Simons, MA, RD, CHES

Sandy works for Nutricia North America.

*based on prices published online by PKU Perspectives as of September 22, 2014.  Varies based on product.

Meet Alicia – My PKU Story

Hi, my name is Alicia.  I am an only child who was born three weeks early in November of 1959.  At this time they had no Newborn Testing for PKU here in the United States.  However, soon after I was born my Alicia - Share My Storymother became worried.  She stayed in continuous contact with my Pediatrician.  He had just read an article concerning  the “Wet Diaper Test,” a way to test someone for PKU.

My doctor called my mother and asked her to bring me into his office because he had a suspicion of what the problem might be.  He used a stick (kind of like a popsicle stick) which was put into my diaper that would turn a green color if the test was positive for PKU.  The same afternoon of the test, the doctor called my mother to tell her that the test was positive for PKU and he was referring us to a hospital in Augusta, Georgia for further testing.  I was confirmed to have classical PKU when I was 4 months old.  There were very few infants diagnosed in the United States at that time. As you can imagine, my parents were devastated and had no clue as to what PKU was or what would happen in the future.

I was placed on a strict low protein diet and PKU formula.  I can still recall not liking the taste of the formula.   My formula was very Jerry Davis - babyexpensive, even back in those days.  My parents had insurance, but the insurance wouldn’t pay for my formula and at times my father would be working 2 jobs just to help pay for it. My mother managed everything to do with my diet from making my formula to measuring my food intake.  I seemed to be doing great over the next several years. Then, suddenly, when I was 5 years old we received a phone call from my clinic and they wanted to see me.  At this time some thought that diet was not for life and I was taken  off my diet.  I can vividly recall what I had to eat for my first meal off diet.  It was at lunchtime and they brought me some BAKED HAM!  Little did I know that this was the first bite of a lifelong struggle for me. Jerry David youngerI remained off diet until I was 44 years old (2004).  It was at this time that I decided to look into going back on diet due to some problems I had begun experiencing.  I had lost my last job due to emotional outbursts and I felt that I needed to see about trying to get some help.  I spoke with my mother and she called my old clinic on my behalf.  I can remember my mother telling me that the doctor said “Get her in here, I don’t care about the money issue.  She needs help to get back on diet.”  So within just a few days I was on my way to clinic again for help.  It was determined at that time the best course for me was to go back on the diet after having been off it for so long.  It was going to be a struggle, but for my health I had to do it. My doctor slowly took me off of all of the bad foods I had been eating for so long and got me started on Xphe Maxamum™ from Nutricia.

First I stopped eating meat and cheese over the next couple of months and then the t a little later on.  I’m currently still on diet, although I do sometimes struggle trying not to eat all the bad foods which I’ve had in past years. I know that I feel better when I’m on diet and have more energy, not to mention that my husband can put up with me so much easier. I am just so thankful for a persistent loving mother, wonderful pediatrician, great support, and a patient loving Husband. I’ve always said that, “God could have made me normal, but he chose to make me with PKU and now what can I do with that?”  I choose to help make the road a little easier for those coming behind me by doing whatever I can to spread the word about PKU. 

CLICK HERE TO SHARE YOUR STORY

Book CoverPKU is Diet-for-LIfe. It’s Never Too Late!

CLICK HERE TO REQUEST A FREE COPY OF “YOUR GUIDE TO GETTING BACK ON THE PKU DIET” TODAY.

Types of Formula

Did you know that there are over 60 different PKU formula world-wide?

Whether you have been drinking the same formula and maintaining excellent dietary control or if you are reading this in a effort to learn more to return to the PKU diet plan, understanding the ‘Types’ of formulas is a great way to get started and stay in the loop of what formulas are available.

Types of PKU Medical Food

The Drink – PKU Formula in a powdered form that you mix with water. This type of medical food typically provides a balance of fat, carbohydrate, phenylalanine-free protein, vitamins and minerals. Often it contains a good amount of calories to aid satiety and help people with higher caloric needs. Examples from Nutricia include Periflex Junior, Periflex Advanced and PhenylAde Essential.

The Low Fat Formula – This type of formula is a growing segment of the PKU marketplace. Since PKU is diet for life, as people age their calorie needs sometimes lessen. Older people with PKU often have a wider array of low protein foods they will eat which makes them less reliant on formula for satiety. Low or reduced fat formulas typically have less calories and are lower in volume so you can drink less to meet your daily PHE-free protein needs, which can aid adherence and help keep levels in check. Examples from Nutricia include Xphe Maxamum, Lophlex Powders (also in Liquid) PhenylAde40, and PhenylAde60.

The Ready to Drink – PKU formula that is pre-mixed and ready to drink is in high demand. Everyone leads busy lives and don’t want their formula needs to slow them down. This segment is growing just as fast as you can drink one of these single serve units. The ready to drink formulas are often low in fat, calories and volume. For example, PKU Lophlex LQ provides 20 g of protein equivalent (PE) in only  4.2 fl oz. Ready-to-Drink (RTD) PKU formula are quick and easy to drink so you so you can get on with your day.

The Fortifier – Concentrated phenylalnine-free amino acid powder that can be added to any low protein food or drink you already enjoy. It can also be added to ‘Drink’ formula to increase protein content without added formula. Examples for Nutricia include PhenylAde Amino Acid Blend and PhenylAde MTE Amino Acid Blend (Minerals & Trace Elements)

The Tablets – Not everyone has an easy time drinking their formula. But the importance of consuming medical food (formula) and the consequences of not are is well known. For this reason there are formulas that are in tablet form. You would need to ingest quite a few to meet your full daily phe-free protein needs, but for some this is a better alternative than drinking formula.  You can choose to just replace 1 serving of liquid formula per day with tablets.  Example, just 12 tablets of Phlexy-10 Tablets replace 10 g PE of liquid formula. Talk to your metabolic professional if you are struggling with formula to see if a tablet or a combination of formula and tablets will work for you.


Posted by: Sandy Simons, MA, RD, CHES

Sandy is a Registered Dietitian and Certified Health Education Specialist. She received her graduate training at Columbia University’s Teacher College in New York. She has been working on the industry side of metabolic nutrition for the past 11 years and is often seen at patient events around the country. This post is based on an excerpt from a book written by Sandy with the help of others titled: My PKU Toolkit: A Transition Guide to Adult PKU Management.