Scroll to top

Tag Archives: Phenyketonuria

Help your child’s teacher better understand PKU

It’s Back-to-School Time! 

The return to school is an exciting time of year.  But for a parent of a child with a metabolic disorder, such as Phenylketonuria (PKU), there are also certain concerns and stresses that comes with the start of school. 

Each year you may be faced with educating a new teacher or school nurse about PKU.

What is PKU?  

How it is Treated?  

What that means to the teacher and fellow students…

Nutricia Metabolics is proud to share an educational handout to help you inform your child’s new teacher and/or school nurse about PKU.

It includes information about What PKU is, What happens, How it is treated with additional classroom tips for the teacher.

Click to Download:  Guide to PKU – Teachers & School Nurses

full-sheet-image
full-sheet-image-back

Click to Download

 

Nutricia also provides information and education available about other rare metabolic disorders such as Maple Syrup Urine Disease (MSUD), Tyrosinemia (TYR), Glutaric Aciduria Type-1 (GA-1), Homocystinuria (HCU) and more available online at medicalfood.com/connect

 

Make PKU Formula Part of Your Daily Routine

If you have Phenylketonuria (PKU), then you know….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
make-pku-formula-part-of-your-day

 

Learn more about Why you need PKU Formula with these tips for Making PKU Formula Part of your Routine 

Download Now

pku-formula-handout

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?

GMP_SAMPLE_button

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.