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“PKU is a family thing:” Lacy talks about raising her daughter Aspen

“When I got the call, I couldn’t process what I was hearing. It was so hard.”

Lacy thinks back to the moment when she learned that her second child, a baby girl named Aspen, was diagnosed with Phenylketonuria (PKU).

PKU is a rare inherited metabolic disorder that means a person must avoid foods naturally high in protein (such as meat, eggs, and even bread). This is done to avoid a build-up of a substance known as phenylalanine in the brain, which is harmful to people with PKU.

Lacy, her husband Darryl, Aspen (now 2 years old), and their other child, Finn (6), live about an hour from New Orleans, Louisiana. Caring for a little one with PKU can be tough, as new parents and families like Lacy’s will know.

“You can’t wing it,” Lacy says, since the diet must be closely monitored to support the baby’s proper growth and development. Darryl and even brother Finn are involved in Aspen’s care, looking after her to see she has the right foods and consumes her PKU-appropriate protein. As part of the PKU diet plan set out by her healthcare professional, Aspen gets essential nutriends and protein by drinking her PKU formula.

“It’s almost like Darryl, Finn, and I also have PKU for the first five years [of Aspen’s life],” shares Lacy. “PKU is a family thing.”

Lacy and the family are especially focused on making sure Aspen gets the proper amount of formula to help her grow and develop. From birth up until now, Aspen drank Nutricia’s PKU Periflex® Early Years, which her metabolic healthcare team recommneded. This formula is complete with DHA & ARA for brain development and prebiotics, which support immune and digestive health.

Learn more about Early Years metabolic infant formulas here.

Aspen now drinks PKU Periflex Junior Plus as her next-stage formula. (Learn more about Periflex Junior Plus here.)

“I try not to make drinking formula a job for Aspen. I leave it out for her and let her have it in her own time.” This is one of Lacy’s tips as far as encouraging a positive relationship between children and PKU formula.

PKU can feel isolating for Lacy and the family since not many other people in their community know what PKU is or how to care for Aspen. So, to connect to other parents with children with PKU, Lacy turned to social media.

She connected with families all over the world, from Ireland to Canada, and she found a fellow mom named Kellie from Connecticut. Lacy and Kellie bonded over the realities of daily life with a new baby with PKU. According to Lacy, Kellie has been “a life saver.”

“We’ve overcome a lot,” shares Lacy, thinking about how she and her family have learned more day-by-day on how to best nurture Aspen. She knows what the high’s and low’s are like, and that’s why she wants to be involved with the PKU community. If she notices a new parent on one of the Facebook support groups, she immediately reaches out to them via private messenger.

“If I can help that person through even one minute, I will. I’ll write to them.”

It’s the spirit of “in this together” that has helped Lacy and her family to where they are today and what she hopes to see throughout the broader PKU community.

We do our best to provide support and education for families like Lacy’s. Take a look at our Learning Center page for disorder-specific videos, booklets, and more. We’re here for you and your family.

If you are a new parent and are interested in learning more about the metabolic formula Aspen used as an infant, see more on Early Years formulas here or ask your metabolic healthcare team.

PKU Periflex Early Years and PKU Periflex Junior Plus are medical foods for the dietary management of Phenylketonuria and must be used under medical supervision.

This blog is brought to you by Nutricia North America.

© Nutricia North America 2020

Monogen®: Minor Formulation Updates, Same MCT%

Below are FAQs about Nutricia’s medical food product Monogen®. There are upcoming, minor formulation changes to Monogen that are explained here.

If you ever have questions concerning your or your child’s diet or condition management, please contact your healthcare team.

What is Monogen, and who uses Monogen?
Monogen is a milk protein-based medical food that is high in medium chain triglycerides (MCT), low in fat, and contains vitamins and minerals. Monogen is indicated for the dietary management of long chain fatty acid oxidation disorders, chylothorax, and other conditions where a low fat, high MCT diet is necessary as a supplemental source of nutrition in individuals over one year of age.

What are the updates to Monogen?
Monogen is available in many countries. Given changes to European regulations, we are making minor adjustments to the Monogen recipe. This includes small changes to the vitamin and mineral profile. These adjustments do not affect the overall fat content of Monogen. In fact, the percentage of MCT in Monogen remains the same.

Why are these changes occurring?
We ensure compliance with applicable laws in the countries where we sell medical foods. For this reason, we regularly review and assess our product portfolio. European regulation changes prompted a review of Monogen, as mentioned above.

I (or my loved one) have been using Monogen. Is the amount of fat in Monogen changing?
No. The fat content and percentage of MCT and LCT in Monogen are staying the same. If you have any questions or concerns, we encourage you to contact your clinic or our Nutrition Services Team at NutritionServices@Nutricia.com.

How do I get Monogen? Will there be any changes to how I or my clinic orders Monogen?
There are no changes to the Nutricia ordering code used for Monogen, which is 106033. You or your clinic can still call us at 1-800-365-7354 or go online (MedicalFood.com) to order Monogen or request samples. You will start receiving this updated product in November 2020.

How do I learn more? What if I have questions?
Please let us know if there are any questions. You can contact our Nutricia North America Nutrition Services Team via email at NutritionServices@Nutricia.com or by calling 1-800-365-7354, Monday-Friday 8:30 a.m. to 5:00 p.m. ET.

Contact your healthcare team prior to making any potential changes to diet or if you have any questions about your or your loved one’s diet or condition management.

Monogen is a medical food for the dietary management of long chain fatty acid oxidation disorders, chylothorax, and other conditions where a low fat, high MCT diet is indicated in individuals over the age of one. Use under medical supervision.

© 2020 Nutricia North America

Helping Families Find Formula Coverage: Nutricia Navigator

Obtaining health insurance coverage for metabolic formula can be stressful in our current times. You may have experienced challenges in getting your formula covered, such as loss of coverage due to an employment change, dropped coverage due to age, and the list goes on. We understand how complicated it can be.

That’s why Nutricia Navigator is here to help. Nutricia Navigator is a free-of-charge assistance program that is available to help guide you through the coverage process for Nutricia metabolic formulas. Our team of experts can help you understand your coverage options, work with public & private payers to find product coverage, and stay by your side until all of your questions are answered. 

Watch the below 20-minute video presentation to learn more about Nutricia Navigator. If you or your family could use help navigating the coverage & reimbursement landscape for metabolic formulas, don’t hesitate to reach out to Nutricia Navigator to get started. Our team is available at 800-365-7354 (U.S.) or by email at NutriciaNavigator@Nutricia.com

In this presentation, we review common health insurance challenges faced by those seeking metabolic formula coverage, such as:

I was denied insurance coverage – where can I go for help?

I am supposed to use a DME company to get my formula, but how am I supposed to pay for this?

My child was recommended a specialty metabolic formula – where do I go for help?

We also review in this video how our team can help by being an advocate for you and your family.

For more on Nutricia Navigator, visit MedicalFood.com/Reimbursement. You can also contact Nutricia Navigator directly for questions or to start working with our team of experts: call 800-365-7354, or email our team at NutriciaNavigator@Nutricia.com.

© 2020 Nutricia North America

Introducing ULTRA!

We are proud and excited to introduce a new addition to our PhenylAde® GMP line of PKU formulas.  The recent months have not been easy, and you may be asking, “Why launch a new PKU formula now?”

The reason was simple.  Our commitment to the PKU community is to provide products that can help improve daily PKU diet management.  We received feedback from the PKU community and healthcare professionals that despite the current pandemic, we should proceed with offering this new option to you, the PKU community.

Nutricia has been developing PhenylAde® GMP ULTRA for a couple of years. From PKU product idea to launch—we want to get it right for you.  Nutricia prides itself on innovations that fill a need in the PKU community and achieve the goal of helping to improve diet management.  We also want to be sure our products deliver on our promise of outstanding taste.

The outcome of this hard work and collaboration with the PKU community is PhenylAde GMP ULTRA!  We consulted with adults and teens with PKU who advised us along every step of the development process.  From product features, taste to packaging design, PhenylAde GMP ULTRA was developed for you, by you.

PhenylAde GMP ULTRA workshops to develop package design and formula taste.

We believe PhenylAde GMP ULTRA will have a positive impact on anyone who may be struggling or looking for a new, great tasting option for their PKU formula. If you are seeking something new to give you a push to stay on diet or come back to the PKU diet, we hope this helps.  We hope you enjoy the taste, convenience and look of PhenylAde GMP ULTRA!

PhenylAde® GMP ULTRA is a medical food for the dietary management of PKU and must be used under medical supervision.

Brought to you by Nutricia North America

©2020 Nutricia North America

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