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Tag Archives: Phenyketonuria

NEW! Low Protein Playing Cards from Nutricia

Figuring out the amount of protein or certain amino acids in food and having to keep track of the amounts consumed can be boring and confusing.

Learning this information, however, is important to managing a special diet for a metabolic disorder.

Low Protein Playing CardsMany people, especially children, are visual learners and learn best when they are given visual cues to reinforce the information they are learning.

These flash cards were designed to make the pearlearning process easier and more fun. They include various food types with the protein, phenylalanine and tyrosine content, making them suitable for metabolic disorders beyond just PKU. In addition, the cards also include French and Spanish translations.

How Do I Use the Low Protein Playing Cards? 

The cards come in four colors to aid in learning the amount of protein or certain amino acids in food.  They also teach how specific foods are consumed when managing a diet for a metabolic disorder.

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 Red cards are a reminder to stop and not eat the foods.

Yellow cards are foods to include in measured amounts.

Green cards are foods eaten in normal quantities.

Blue cards represent special medical foods and formulas.

Please always follow your dietitian’s guidance on which foods are appropriate in your individual situation and consult with your dietitian before incorporating any medical foods in your diet.

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5 Fun Ideas for Using the Low Protein Playing Cards from Nutricia

  • Traditional Flash Cards (All Card Colors Used

    Goal: Learn phenylalanine and/or tyrosine and protein content of various foods

  • Stop Light (Red, Yellow and Green Cards Only)

    Goal: Learn which foods are low, moderate and high in protein/PHE/TYR content

  • Go Fish (All Card Colors Used)

    Goal: Obtain the most matches and learn about protein/PHE/TYR content of foods

  • War (Red, Yellow and Green Cards Only).

    Goal: To win all your opponent’s cards and end up with the most cards while also learning about protein/PHE/TYR content of foods

  • Meal Planning (Red, Yellow and Green Cards Only)

    Goal: To learn how to interchange foods within your allowed protein/PHE/TYR requirements.

 What will be your favorite game?

Nutricia Metabolics is dedicated to providing not only advanced medical nutrition for those living with inborn errors of metabolism, but we are also committed to education and support.

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The Low Protein Playing Cards are FREE for families and can be requested online at MedicalFood.com.

Full directions and additional games are included (in English, French and Spanish) with each set of cards.

Note:  Only 1 set of cards per household.  Available while supplies last.

 

Celebrate PKU Awareness Month with a Toast to PK-YOU!

Raise a glass to PKU to help raise awareness in the month of May!

POST & TAG your photo on Facebook or Instagram raising a glass to be entered to WIN A FREE low protein food gift box from NUTRICIA!  

There will be 5 lucky winners!  

See contest rules below.

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To show support for PKU and be entered to win POSTand TAG your photo with:

 #Toast2PKU and #NutriciaMetabolics

 

Contest Rules: No purchase necessary to enter. Entrants must be 18 years or older and reside in the United States and must not have received any other free products or items from Nutricia North America (“Nutricia”) in the preceding year. Limit 1 entry per person. A total of five low protein gift boxes (valued at approximately $50) will be awarded to five randomly chosen “Support PKU Awareness Month with a Toast 2 PK-You” participants (limit one gift box per participant). No one from Nutricia or anyone related to a Nutricia employee is eligible for participation in this sweepstakes. All entries become the property of Nutricia to be used at their sole discretion. All entries must be posted on Facebook or Instagram with the hashtag “Toast2PKU” and “NutriciaMetabolics” between 5/1/17 and 5/31/17 to be entered into the gift box drawing. The five winners will be selected by Nutricia by 6/1/2017 and will be notified by Nutricia on or before 6/12/2017. The five winners will not be allowed to participate in any other Nutricia contests for a period of one year.  Facebook and Instagram are in no way affiliated with Nutricia and have not endorsed this contest or Nutricia products.

How does PhenylAde GMP taste? Ask David.

 

My name is David Harris. I’m 40 years old and I was diagnosed with classical PKU.

When I tasted the PhenylAde GMP product, it was very easy to drink, it was very smooth, and in comparison to other products in the market, I actually preferred it.

Formula taste is key. It’s very important, because without a good taste, and a good consistency; it’s very difficult to get down.

If it tastes good, then I’ll drink it.


Curious to try PhenylAde GMP?

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New Artificial Sweeter – OK for PKU?

FDA Approves New Artificial Sweetener

A new sugar substitute called advantame was approved on Monday by the U.S. Food and Drug Administration.  Advantame is chemically similar to aspartame (Equal), and certain people should avoid or limit their use of aspartame, the FDA noted.

These people have a genetic disorder called phenylketonuria (PKU), which makes it difficult for them to metabolize phenylalanine, a component of both aspartame and advantame. Food with aspartame must include label information warning people with PKU about the presence of phenylalanine.

The FDA evaluated whether advantame should also carry alerts for people with PKU. Because advantame is much sweeter than aspartame, only a small amount is needed to achieve the same level of sweetness.  As a result, foods that contain advantame do not need to include alerts for people with PKU, the FDA said.

Be sure to talk to your metabolic professional if they feel advantame is suitable for your diet.  Currently, the exact PHE content has not been reported.

SOURCE: U.S. Food and Drug Administration, news releases, May 19, 2014

What is PKU?

What is PKU?

If you have PKU or your child with phenylketonuria is older, you may think this is a silly question, but even though you are living with and managing this metabolic condition on a daily basis, you may not completely understand what PKU is or be able to explain it to others.

There are some terms that you may or may not be familiar with. Learning these key terms will help you better understand or better explain why you follow a special low protein diet.

Art: In “medical terms’ Phenyketonuria (PKU) is an autosomal recessive genetic disorder that results in incomplete phenylalanine metabolism.

But in “REAL TERMS” what does this mean?

Let’s break it down:
Autosomal: a chromosome other than an X or Y sex chromosome
Recessive: a trait that appears only when a gene has been inherited from both parents
Genetic: hereditary characteristic that you get from your parents
Disorder: an abnormal condition
Phenylalanine: an essential amino acid (must be consumed, the body doesn’t make it) commonly referred to as “PHE”
Metabolism: the process in which your body breaks down particular substances

So in REAL TERMS:
PKU is an inherited genetic disorder that prevents the full breakdown of phenylalaine.

Did you know: (image) When phenylalanine builds up in the blood it is excreted in the urine as phenyketones. That is how this condition became known as PhenyKetonUria or PKU for short.


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 also found in a book written by Sandy with the help of others titled: My PKU Toolkit: A Transition Guide to Adult PKU Management.