All posts by Nutricia Metabolics

Learn how Rene returned to the PKU diet as an adult

Being off the PKU diet leads to high phenylalanine (PHE) levels and is associated with a variety of symptoms, such as feeling tired, irritable and forgetful.  This is how Rene felt before he went back on the PKU diet as an adult.

We met up with Rene in his home in San Diego, CA to learn more about why and how he returned to the PKU diet at age 36.

“My name is Rene and my entire life, I’ve had PKU.  I was good on my diet as a kid, because my mom and aunts all helped making my food, teaching me how to cook and reminding me to take my formula.  As I got older it got harder to stay on diet and one day I just gave up.”

Rene shared that the most difficult time was in his teen years, since he was completely off diet.

“I was feeling tired most of the time. It was hard to be active and I did not do well in school. It was hard to memorize stuff. I just wasn’t myself.  I was always angry.”

So we wanted to know why Rene decided to come back to diet as an adult.

“One of the big motivations that I had was my daughter. I wanted to be a better role model and be there for her more.  I am a single dad, and when I was off-diet I didn’t really have energy to play with her, help her with homework.  When I look back, I yelled a lot, too.”

“I just decided I needed to be a better parent so I can go to work and still have energy to focus on her (my daughter).”

We know it is not easy to get back on the PKU diet after being off diet for several years, so we wanted to know how Rene did it.  What were your first steps?

“One day, I said okay, I’m just going to call my clinic and make an appointment.  Then I had my first doctor appointment to get on the diet and get my PHE levels down.  Due to my insurance I had to drive all the way to Los Angeles, but I had my daughter with me for motivation and it was a good appointment.”

“The clinic said that there were several new options in PKU formula and they taste way better then they did when I was a kid.  They gave me the PhenylAde® GMP Ready so I’m like okay, I’m going to give it a try.” “The PhenylAde GMP READY was great. I actually love it. I don’t have to scoop it or anything.  I can take it to work. I can take it anywhere. It’s really smooth, it’s really tasty. It doesn’t have an aftertaste.”

Rene also told us that he likes to cook and remembers several vegetarian recipes his aunts taught him as a child.  He shared some recipes with us as he made lunch for himself and his daughter.

“Now that my PHE levels are back in range, I feel way better. I’m more active. I’m going to the gym, working out, playing soccer, and I also play with my daughter now, which I was not doing before”. 

We were curious if Rene had any advice for other adults with PKU who may be thinking about returning to the PKU diet.

 “Find a motivation and really focus on that.  Returning to diet is not something that happens overnight, you do need to work at it and plan your meals a bit more than when you are not on diet. The impact is you have a little bit more control of your highs and lows when sticking to the diet.  I’m really glad I did it. I feel way better.”

“You should also give PhenylAde GMP READY a try, it’s awesome, not what PKU formula used to taste like. For me it was a life-changer.”

 

Watch this video to learn more about Rene and why he returned to the PKU diet. 

Interested in trying PhenylAde GMP READY?

Brought to you by Nutricia North America

PhenylAde GMP READY is a medical food for the dietary management of proven Phenylketonuria (PKU) and must be used under medical supervision. Always consult your metabolic healthcare professional prior to making any changes to your PKU diet.

©2020 Nutricia North America

Get READY for an easier way to drink PKU formula

When it comes to PKU formula, Nutricia understands that taste matters!  That is why our products are designed in partnership with the PKU community.  We do this by taste testing new products during development and gaining feedback on package design with people from the PKU community. It’s a very important part of our process.

PhenylAde® GMP READY delivers on the promise of great taste.  It has already helped people return to the PKU diet and has also changed the minds of some about trying new formulas.  If you are curious about the taste, request a sample (link below) and see for yourself.

Learn More about PhenylAde GMP READY

Brought to you by Nutricia North America

PhenylAde GMP READY is a medical food for the dietary management of proven Phenylketonuria (PKU) and must be used under medical supervision. Always consult your metabolic healthcare professional prior to making any changes to your PKU diet.

©2020 Nutricia North America

Push-Ups for PKU Challenge

Raise Awareness for PKU this May: Take the Push-Ups for PKU Challenge!

Nutricia North America is proud to support PKU Awareness Month this May by sponsoring a Push-Ups for PKU Challenge!

From May 1 to 31, Nutricia North America will donate $10 for each video you post on Facebook or Instagram of you doing (or trying to do!) at least 5 push-ups. The donations* will go to PKU News, the creators of How Much PHE, a critical PKU community support organization.

Post your video on Facebook or Instagram, and tag your video with #PushUps4PKU and #NutriciaConnect to be counted.

Get involved and challenge your friends to help spread the message of PKU Awareness!

Anyone can do it! You can do the push-ups on your knees, on your toes, or even against a wall.

So don’t delay, do your push-ups today!

*(Nutricia North America will donate up to $3,000 total.)

Details:
Nutricia does not assume and it hereby expressly disclaims any and all liability to any person or entity for any claims, damages, liability or other loss in connection with this event. In no event shall Nutricia be liable to any person or entity for any direct, special, exemplary, indirect, incidental, consequential or punitive damages of any kind or nature whatsoever (including, without limitation, any liability for injury or other damage related in any way to participation in this event directly or indirectly) whether in an action based on contract, warranty, strict liability, tort (including, without limitation, negligence) or otherwise, even if Nutricia has been informed in advance of the possibility of such damages or such damages could have been reasonably foreseen by Nutricia. Nutricia will cap the donation to a maximum of 300 videos during this time period or up to $3000.

© 2020 Nutricia North America

Upcycling Nutricia Cans

Wait, wait! Don’t throw out your formula can yet!

You can reuse your Nutricia Metabolics formula cans for arts & crafts and more! First, fully clean out the can. Second, follow our easy and fun tips below.

Be sure to clean your cans out thoroughly before reusing them. We recommend wiping out the cans with a damp towel. Let them sit out until they are 100% dry. You’re ready to give them a new life!

Pot for Flowers and Plants

Decorate the outside of the Nutricia can and carefully poke a hole at the bottom of the can to allow for drainage. Fill with potting soil and plant flower seeds or re-pot another plant.

Musical Instruments

Interested in crafting a set of maracas or drums? Take the plastic lid from the can and grab a pair of sturdy sticks and start drumming right away! You can also make a maraca out of Nutricia cans by adding beans or pebbles for a neat sound effect.

Piggy Banks

Turn an empty Nutricia formula can into a cute piggy bank for your child or even for yourself! Paste pictures of your kids onto the outside, and then use a box cutter to create a small rectangular cutout in the plastic lid. Then, start saving!

Decorative Storage

Use old Nutricia cans to hold toys such as building blocks, marbles, or toy cars. You can also reuse formula cans to keep your scrapbooking or craft items in one place.

Re-used Nutricia cans make great storage containers for buttons, ribbons, safety pins, beads and other small items you have lying around. You can even print out pictures of these and then use them to decorate the outside of the can. Customize the outside of the can with printed pictures of what’s stored inside.

Holiday or Birthday Gift Basket

Paint the outside of the Nutricia can for the holiday season or someone’s birthday, and fill with treats, holiday goodies or a personal gift. Think about attaching a handle for easy carrying.

And More: playsets, headband organizers, teacher gifts!

Re-used cans are able to be repurposed into so many crafts and activities for your family. If you have used your Nutricia packaging in a creative way, comment below. We would love to learn from you!

Brought to you by Nutricia North America

© 2020 Nutricia North America

Get Creative with PhenylAde™ 60

Looking for different ways to mix your PhenylAde® 60 Drink Mix?   Here are three quick and easy ways to add variety to your day to fight formula fatigue.

Check out these great, 1-step recipes featuring PhenylAde 60.

ICED COFFEE

ICED TEA

ORANGE DRINK

Looking to sample PhenylAde 60 Drink Mix or another formula from Nutricia North America?

REQUEST A SAMPLE NOW

Brought to you by Nutricia North America.

PhenylAde GMP 60 is a medical food for the dietary management of Phenylketonuria (PKU) and must be used under medical supervision.

© 2020 Nutricia North America

My PKU Activity Book

Hello! We hope everyone is safe and well. Staying home with school aged children is not always easy. To help provide an educational activity, we are proud to share a printable copy of My PKU Coloring Book.

This activity book is full of fun and educational coloring pages, word searches and other games to keep your school-aged child and their siblings engaged and learning about Phenylketonuria (PKU).

Examples from My PKU Activity Book:

 

 

 

 

 

 

 

 

 

Brought to you by Nutricia North America.

© 2020 Nutricia North America

A message from our CEO at Nutricia North America on COVID-19

March 13, 2020

Dear Nutricia Customers and Community,

At Nutricia, we know that our customers, patients, and their families rely on our medical foods every day. The health and safety of our customers and patients have always been our highest priority. As the COVID- 19 situation continues to evolve, our commitment to supply, quality, and services to you has never been stronger.

I would like to share some of the actions we are taking in the US to continue to deliver on our commitment and provide the very best care.

Production Capability and Supply. We carry several months’ worth of products here in the United States. Our company has confirmed and secured supply of ingredients to provide continuity of on-going manufacturing.

As part of the Danone company, one of the largest food companies in the world, our products are manufactured in the US, UK, and the European Union. Supply has not been affected from any of these locations. Although there are travel restrictions for individuals from Europe, this does not apply to the free flow of commerce and goods, as clarified by the Department of Homeland Security on March 11, 2020.

High Product Safety & Quality Standards. As a global leader in medical nutrition, we operate at the highest level of quality and food safety standards. All our facilities operate at standards beyond the requirements of any country and are regularly FDA inspected. We continue to monitor the situation closely and have been implementing additional precautions as necessary.

Continuity of Service. Considering the current environment, we are taking steps to protect the health and safety of our employees while also maintaining a high level of continued service to our customers. We’ve taken actions to promote flexible work arrangements and our highly dedicated team will continue to support you in every way. Our customer service team is ready to help you. They can be reached at 1-800- 365-7354.

All of us at Nutricia understand this is a stressful time for everyone. You can count on us to continue to provide the best care for you.

Sincerely,

Robert Schnurr CEO, Nutricia North America

Tips for Dining Out on a Low Protein Diet

Dining out can seem tough on a low protein diet, but it’s not impossible. Here are some helpful tips for going out, including what to look out for and how to prepare for a fun time on the town.

Plan ahead as much as possible
If you can, view the menu online ahead of time. Call the restaurant to ask any questions you have. They may even allow you to bring low protein products from home so the kitchen can make a special dish.

Try to leave enough protein allowance
For yourself or your loved one on a low protein diet, try to leave enough protein allowance for your meal. Track breakfast and lunch so that you know how much is left for dinner at a restaurant.

Pro tip: ingredient card
Create a card that lists the foods you or your loved one must avoid, and give it to your server or share with the kitchen staff. Consider listing meat, fish, cheese, eggs, beans, soy products like tofu, seeds, and nuts.

Ask questions and be aware of “hidden protein”

Don’t be afraid to ask questions about what’s on the menu. In recent years, many restaurants have become used to questions about ingredients and dish preparation. You always want to know what’s in your food.

Also, be sure to avoid “hidden protein.” This is when an ingredient contains a high-protein element but often the name does not say it. An example is Caesar Salad Dressing, which often contains anchovies, although you would not know that from the dressing’s name.

FYI: The following ingredients may contain high protein foods:

*Phenylalanine is important for those with Phenylketonuria (PKU) and Tyrosinemia (TYR) to track.

If you or your loved one has PKU, we have these tips printed on our Dining Out with PKU education guide. Download your copy in English or Spanish on our Learning Center page.

© 2020 Nutricia North America

Kristin Rapp: Running on Inspiration

12 marathons, 19 half marathons, 100-mile bike rides, and triathlons: Kristin Rapp’s athletic achievements are impressive. What’s more is that Kristin has Homocystinuria (HCU) and manages the low protein diet while training.

How does she do it? What keeps her motivated? We sat down with Kristin to answer this and more.

Kristin was diagnosed with HCU as an infant, and she has successfully managed the condition into adulthood. Kristin currently lives in the Washington, D.C., area. Besides running, Kristin spends her free time acting as Treasurer of HCU Network America, a leading HCU patient group in the U.S.

When it comes to running, Kristin first started in 2006 at a race event in Philadelphia.

“I was active in sports in school and college, so I was interested in giving [running] a try. I started training, and it felt so wonderful after the finish!

Kristin kept at it. Then, a big turning point came in 2011: “I met someone else with HCU for the very first time,” says Kristin, describing the first national HCU Conference in Colorado.

It was a moving experience for her as she realized that other people with HCU had significant challenges due to the disorder. It got her thinking about how she could further connect to the HCU community.

“I thought I could combine my passion for running with fundraising and inspiring others with HCU.”

What started as a thought has turned into a successful passion project: Kristin started training with a rare disease running and fundraising team, she started a blog about running and HCU, and she completed elite marathons in New York, Boston, and D.C., among other places.

How does she stay motivated mile after mile? Kristin is fueled by the community:

It’s an amazing motivator, and you can tell that thinking about and being inspired by the HCU community is one of the most important parts of Kristin’s race preparation.

As for diet and training, Kristin is used to running and managing the low protein diet after her many years of experience. Some of Kristin’s favorite foods for fuel are bananas and low protein pastas.

Want to read more about nutrition and sports training for athletes with disorders of amino acid metabolism? Check out our introductory sports series on our blog.

For aspiring runners and marathoners with inborn errors or metabolism like HCU, Kristin is cheering them on:

“Talk with your metabolic clinic. Don’t feel limited. There are other young adults who are athletic in the HCU community. We share info on preparing for races.”

As for what’s next for Kristin, she has plans to run the Berlin, Germany, marathon in 2020! Also, she raised $10,000 during 2019 for HCU research and plans to continue fundraising for HCU.

While her race medals are impressive, what’s most inspiring is her commitment to the community. Go, Kristin, go!

Always consult your metabolic healthcare professionals before making any changes to diet and exercise routines.

If you are an aspiring runner with an inborn error of metabolism such as HCU and are looking for a peer to connect with, Kristin is happy to connect. Contact her at KClubbs@hcunetworkamerica.org

For more on Kristin, visit her blog on running and HCU.

To learn more about Nutricia’s products for HCU, visit us at MedicalFood.com.

© 2020 Nutricia North America