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Category Archives: Creating Connections

“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

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

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

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