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.
An easy way to add Glycomacropeptide (GMP), made from a whole protein source, to your PKU diet
Simply mix with just 6 fl oz of water or any flavored drink for added variety
Great as a once daily or as your main PKU formula*
So many choices, how will you mix it in?
*Must be combined with an appropriate vitamin and mineral supplement when taken as the sole source of PKU medical food. Be sure to consult your metabolic healthcare professional prior to making any changes to your PKU diet plan.
6:00 pm – 8:00 pm – Registration with Vendor Booths
Saturday, November 12, 2016
8:30 am – 4:00 pm – Teen & Adult Focused Education Sessions
The Science Behind Staying on Diet – Dr. Mitzi Grant, Drexel University
The Simplified PKU Diet – Kayt Marra, MA, RD, CDM, CCRP, University of Albany
Communication and Personal Advocacy – Sharon Ernst, MPH, RD, CSP, FAND, Linda Leuffgan, RD & Rachel Flar, Reimbursement Specialist
BREAKOUT SESSIONS (Attend 3 Sessions)
Contemporary Issues for Adults with PKU
Life On Campus for Teens & Young Adults with PKU
Meal Planning and Healthy Eating
Finding Low Protein Foods at Your Local Supermarket
5:00 pm – 10:00 pm – Trip to Hersheypark for Dinner & Rides!(optional)
Sunday, November 13, 2016
8:30 am – 12:00 pm – Low Protein Cooking Workshop
Spend the morning in small groups learning new low protein recipes and simple techniques for preparing delicious low protein meals in minutes. Rotate through a variety of stations, each with a personal recipe guide and tasting! This workshop is going to be unique and delicious!
Talk to your metabolic dietitian or clinic about a PhenylAde GMP today!
DID YOU KNOW…
Nutricia has a team of Reimbursement Care Specialists to assist you in making a change to PhenylAde GMPor any other Nutricia product. They can verify insurance benefits, help you find a supplier and more.
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.
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.
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.
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.
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 mother 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 expensive, 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. I 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.