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Tag Archives: Phenyketonuria

PKU Lunch Tips for Back-to-School

katieby – Katie Maquire, Adult with PKU – guest blogger

I don’t know about you, but it was pretty stressful for my parents sending me off to school in September knowing that I would be making many food choices on my own without them present.

back-to-school-imageALL children should learn to make healthy food choices. Children with PKU are no different. Learning to eat low protein and healthy can begin at a young age when you are grocery shopping or prepping food together in the kitchen.

PKU Friendly Lunch Tips for Back-to-School:

  • Pack lunch in fun, colorful containers in all different sizes.

  • Use an insulated lunch tote with ice packs to keep food and formula cool.

  • Make lunch colorful with a small amount of different veggies, such as baby carrots, cherry tomatoes, cucumbers, yellow peppers, etc.

  • Prepare, weigh and measure food ahead of time to speed up mornings.

  • Involve your child in shopping, prepping and weighing their own lunch.iStock_000015639017Medium

  • Give your child a low protein “surprise” snack, like Maddy’s Low Protein Sugar Cookies.

  • Write a special good job note or include a sticker 2-3 times a week.

  • Send formula in a fun re-usable drink container or sports bottle.

  • Plan ahead with a 5-day menu to ease grocery shopping and food prep.

  • Try a Ready-To-Drink PKU formula if unable to mix formula at school.*

Katie Maguire is an adult with PKU.  She is currently a second grade school teacher.

*Important:  You must consult a metabolic healthcare professional prior to making any changes in your child’s PKU diet plan.

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Looking for a new Back-To-School PKU Formula?  For a limited time:

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Make PKU Formula Part of Your Daily Routine

If you have Phenylketonuria (PKU), then you know PKU formula is part of your life.  

PKU Formula is one of the most important parts of your diet.

Since PKU is generally managed with a diet low in whole protein, you need to get additional, PKU-appropriate protein from a different source.

PKU formula is your main source of protein and is essential for your health and well-being. Taking your full prescription of formula every day will provide your body with the protein it needs.

 

Here are some tips to help make PKU formula part of your daily routine
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Learn more about Why you need PKU Formula with these tips for Making PKU Formula Part of your Routine 

Download Now

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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.