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Category Archives: Parents Corner

Proud Moments for the Mullen Family

Brady and Quinn drink PhenylAde® GMP Drink Mix and start owning their PKU diets

Do you remember the moment you got the call about your child having an inborn error of metabolism?

In this video, Allyson Mullen shares her heartfelt story about that moment. Her sons Brady and Quinn received classical Phenylketonuria (PKU) diagnoses, which scared Allyson at first. Allyson opens up about what she’s learned as a parent and how Brady and Quinn have started taking on responsibility for their PKU management.

Allyson also shares why the Mullen family made the move to PhenylAde GMP Drink Mix for the boys’ PKU formula. Spoiler Alert: Brady actually called this formula “delicious,” and mom Allyson loves it because the formula contains glycomacropeptide (GMP). GMP is made from a whole protein source, and Nutricia’s PhenylAde GMP Drink Mix has a creamy, mild vanilla flavor with a smooth drinkable texture. It is also available in an original plain flavor.

Watch now to hear more about Allyson Mullen’s proud moments and why her boys love PhenylAde GMP Drink Mix.

Brady and Quinn Mullen made the move to PhenylAde GMP Drink Mix for their PKU formula.

Will your family give it a try?

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

Always consult a metabolic healthcare professional prior to making any diet changes.

© 2019 Nutricia North America

Back to School Interview with Heather Bomar

Heather, right, with daughter Ellis

Tips and wisdom from a parent of a PKU 7th grader

“I feel like I’m pulled in four different directions all summer!” says Heather Bomar of Brentwood, Tennessee, in describing her busy but fun summer season. Her four children, including 12-year-old Ellis who has classical Phenylketonuria (PKU), do a variety of activities over the summer. This means Heather spends much of the warmer months making sure they get where they need to go. 

In thinking about the back-to-school season, Heather reflects that the new year brings a new routine:

“The kids actually love the new schedule and seeing who’s in their classes,” shares Heather. The new routine also helps keep Ellis’ phenylalanine (PHE) levels in check, since the school year means set meal times and fewer impromptu gatherings that may or may not have low protein food options.

With Ellis heading into 7th grade, Heather is very familiar with back-to-school planning that works well for both Ellis and the family:

Download our Teachers and School Nurses PKU Education Guide to hand to your child’s teachers or use during parent-teacher meetings! Check out other PKU educational materials on the Nutricia website.

First, Heather meets with Ellis’ new teacher at the beginning of each school year to run through the basics of Ellis’ condition and diet. Second, she recommends co-creating a plan with the teacher, if necessary, to provide the best chance of success for a student with PKU, such as the student sitting in one of the least distracting places in the classroom. 

One of the most top-of-mind topics for parents of children with PKU is school lunch. The Bomars send Ellis to school with lunches packed at home. It’s a system that works for Ellis and the family. For her PKU formula, Ellis drinks PhenylAde® GMP Mix-In formula at school. When asked about snacks and lunch items, Heather responds without hesitation that Ellis’ favorite is “anything that she can dip in Ranch dressing!” Examples include celery, carrots, and peppers.

Ellis drinks PhenylAde GMP Mix-In formula at school. Will your family give it a try this year?

Other lunch favorites of Ellis’ include dried fruit, especially store-bought freeze-dried strawberries and apples. After school or at home on the weekends, Ellis enjoys low protein crackers smeared with butter and salt, a snack that Heather sometimes shares with her daughter as they catch up and talk about Ellis’ middle school, which Heather also attended!

Outside of lunchtime and PKU management, Ellis’ 7th grade year will revolve around establishing her sense of self: 

“Ellis loves school and has a good group of friends,” reflects Heather, “and she’s focused on finding her identity in things outside of PKU.”

As advice to other parents raising children with PKU, Heather takes a step beyond day-to-day food prep and considers the full parent-child relationship: “Stick with them through the highs and lows,” says Heather, “Keep up open conversations.”

… And don’t forget the Ranch dressing!

Read on for 10 More Low Protein Lunch Tips for School:   http://www.lowproliving.com/lunchtips/

PhenylAde GMP Mix-In 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 diet.

© 2019 Nutricia North America

Loprofin Baking Mix – A versatile low protein baking mix

Loprofin Mix is an all‐purpose, low protein baking mix, great for cooking and home‐made pastries. A packet of yeast is provided in each box, making baking easy, especially bread. Nutricia also offers Loprofin Chocolate Cake Mix, great for any chocolate cake or muffin recipe. Tasty recipes, such as breads, naan, cupcakes, gingerbread and many more can be found here!

Loprofin Mix is a great substitute for Wel‐Plan Baking Mix, which is unfortunately no longer available. Several low protein expert chefs shared that they substitute Wel‐Plan Baking Mix with Loprofin Mix at a 1:1 ratio. For example, if a recipe asks for one cup of Wel‐Plan, you would use one cup of Loprofin Mix. We have also test‐baked a few low protein bread recipes from “Apples to Zucchini”, a cookbook by Virginia Schuett and Dorothy Corry, and confirmed that Wel‐Plan can be substituted at a 1:1 ratio with Loprofin Mix for many bread recipes. Check out these recipes with Loprofin Mix that work for making bread – with or without a bread machine!

Many of you relied on Maddy’s Homestyle baking mixes as convenient, quick mixes. We developed recipes where you can use the Loprofin Mix to make the same baked goods. New Loprofin recipes such as,  sugar cookies, banana bread and blueberry muffin, to list just a few can be found here.

Look out for our future blogs on holiday cooking and baking, as well as making the low protein kitchen convenient, quick and tasty!

Happy Baking!

Tips for a Low Protein Friendly Halloween

Trick or Treat?

For children with an inborn error of  metabolism, Halloween celebrations can be tough since protein-containing candy and snacks tend to be the classic party staples. Additionally, these celebrations can be scary on parents as they want their children to fully enjoy in the festivities while maintaining their dietary restrictions.

Here are a few tips, resources, and recipes to help make Halloween fun while staying on a diet low in intact protein:

First:

  • Speak with teachers or other parents about what your child can and cannot have at Halloween parties or school

  • Also talk with your child about the importance of staying on diet and remind them to check with you to determine if a particular food or candy is

Now to the Fun Stuff:

  • Get creative with Halloween Have non-food treats to hand out at home or at school. Think dollar store toys, stickers, party favors, and coloring books.

  • Plan an alternative activity to trick-or-treating, such as Halloween slumber party, game night, craft party, or a scavenger

  • Supply low-protein treats for your child’s Halloween parties and festivities so he/she has something to enjoy and doesn’t feel left out – View Halloween Cupcake Recipe

  • Consider having a “swap-party” where your child can swap candies he/she cannot have for “allowed” This way everyone gets what they want!

  • Make your child’s metabolic formula festive! Serve it in a Halloween- themed cup, use fun straws, or add some orange food

Post Your Formula ‘Dressed-Up’ for Halloween and TAG Nutricia! 

#NutriciaMetabolicNutrition      

Halloween Low Protein Cupcakes

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Surprise a special someone or treat yourself to a Halloween cupcake. These cupcakes are made with Loprofin Baking Mix. They are easy to make and great for at home, work or parties.

 

Makes 10 cupcakes

 

Ingredients

  • 88 g (3/4 cup ) Loprofin Baking Mix
  • 1/4 cup white sugar
  • 1 teaspoon egg replacer
  • 1 teaspoon baking powder
  • 5 ounces of water
  • 1/4 cup margarine
  • 1/2 teaspoon vanilla extract
  • 4 drops orange food coloring
  • 1/2 cup white frosting
  • 20 candy corns

 

Method:

 

  1. Preheat oven to 350°F (180°C)
  2. Cream together margarine and sugar until light and fluffy
  3. Add Loprofin Baking Mix, egg replacer, and baking powder into the creamed mixture and mix well
  4. Add water, vanilla extract and orange food coloring gradually, mix until smooth
  5. Spoon batter into paper cups filling each cup about 2/3 full and bake for approximately 10-15 minutes
  6. Let cool on a baking rack
  7. Decorate with frosting and candy corn
Nutritional Information Per Cupcake
Calories 155
Protein 0.1 g
Phenylalanine 4 mg
Leucine 7 mg

 

Note:  Any additional frosting or decorations may add additional protein, phenylalanine, leucine or calories, be sure to read labels and account for any topping or decorations.

All Nutricia products shown are for the dietary management  of inborn errors of metabolism and must be used under  medical supervision. Please consult your metabolic healthcare professionals prior to making any changes to your diet.

10 Low Protein Lunch Tips for Back-to-School

Back to School: Attention Moms & Dads

Written in collaboration with Katie Maguire, PKU Adult and 2nd grade school teacher

I don’t know about you, but it was 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.

ALL children should be able to make healthy food choices. Children with PKU, MSUD, TYR or other metabolic disorders are no different.

Learning healthy choices can begin at a young age when you grocery shop and prep food in the kitchen together.

10 Low Protein Lunch Tips for Back-to-School

 

  • Pack lunch in fun, creative 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.

  • Give your child a low protein “surprise” snack like homemade cookies or a cupcake.

  • 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 formula if unable to mix formula at school.

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


Ask your clinic about Ready-to-Drink Formula for school children

 

Periflex® LQ is a great tasting, ready-to-drink   that provides 15 g of protein equivalents with 0 mg of PHE.  (For PKU Only). Great for school lunch!

 


Nutricia also offers the Lophlex® LQ line of Ready-to-Drink formula options for Maple Syrup Urine Disease (MSUD), Tyrosinemia (TYR), Homocystinuria (HCU) and Phenylketonuria (PKU).

 

 

Lophlex LQ is a low volume, quick and easy way to get 20 g of protein equivalents.

As always, check with your dietitian if these products are appropriate for your child prior to making any changes to their diet.

Ask your clinic about Periflex LQ or Lophlex LQ Today!

 


Periflex LQ is a medical food for proven Phenylketonuria (PKU). Lophlex LQ is a medical food for proven Maple Syrup Urine Disease (MSUD), Tyrosinemia (TYR), Homocystinuria (HCU) or Phenylketonuria (PKU). Must be used under medical supervision. Please consult a metabolichealthcare professional prior to making any changes in your child’s diet.

©2018 Nutricia North America

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

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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

 

Are you using a Maxamaid or Milupa formula?

You may have heard the news, and if not, we are glad you stopped by.

The past couple of years have been exciting as we have enhanced our products to be in line with the latest nutritional guidelines and grow with patients from infancy to adulthood.

We proudly introduced our Anamix® Early Years line for infants with the added benefits of DHA & ARA and prebiotic fiber to be closer to breast milk than ever before*! In addition, we launched the Anamix® Next line of products, which contain added DHA & a multi-fiber blend.

Having improved our Metabolic formulas we are no longer suppling Maxamaid** and Milupa formulas after June 2017 or until supplies last. Please see attachments for specific products and alternative options to transition to.

We are confident that these changes are in the best interest of metabolic patients; however, we certainly understand the challenges that may come with transitioning to new formula. If you are currently using a Maxamaid or Milupa formula please follow the steps below to start your transition:

  1. Contact your clinic/healthcare professional to find other products within our portfolio and start the transition process. You can view our formulas by disorder below but please do not initiate a transition on your own.

  2. If you have questions regarding insurance reimbursement, contact our Reimbursement Care team Monday – Friday 8:30am – 5:00pm EST at 1-800-605-0410.

  3. If you have product related questions or need help finding a supplier for your new formula, contact our Customer Service team Monday – Friday 8:30am – 5:00pm EST at 1-800-605-0410

Please know our goal is to provide the best nutrition possible, and we are committed to bringing the best metabolic products to you and your family.

Sincerely,

The Nutricia Metabolic Team

*Compared to Nutricia’s Periflex Infant and Analog formulas

** With the exception of XMet, XCys Maxamaid

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Teen & Adult PKU “Diet-for-Life” Conference

Teen & Adult

 November 11-13, 2016  –    Harrisburg, PA

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Deadline to Register:   November 7, 2016

Join together for a weekend of of fun, learning and new friendships.  This event is recommended for those currently on-diet or wanting to get back to the PKU diet.  

The weekend will focus on learning more about PKU and improving diet management skills.  

Plus…a fun trip to Hersheypark!   

 

AGENDA

 

Friday, November 11, 2016   

6:00 pm – 8:00 pm – Registration with Vendor Booths

Saturday, November 12, 2016

8:30 am – 4:00 pm – Teen & Adult Focused Education Sessions

  • The Science Behind Staying on DietDr. Mitzi Grant, Drexel University
  • The Simplified PKU Diet Kayt Marra, MA, RD, CDM, CCRP, University of Albany
  • Communication and Personal AdvocacySharon Ernst, MPH, RD, CSP, FAND, Linda Leuffgan, RD & Rachel Flar, Reimbursement Specialist

LUNCH BREAK

BREAKOUT SESSIONS (Attend 3 Sessions)

  • Contemporary Issues for Adults with PKU
  • Life On Campus for Teens & Young Adults with PKU
  • Meal Planning and Healthy Eating
  • Finding Low Protein Foods at Your Local Supermarket

5:00 pm – 10:00 pm – Trip to Hersheypark for Dinner & Rides!(optional)

Sunday, November 13, 2016

8:30 am – 12:00 pm – Low Protein Cooking Workshop

Spend the morning in small groups learning new low protein recipes and simple techniques for preparing delicious low protein meals in minutes.  Rotate through a variety of stations, each with a personal recipe guide and tasting!  This workshop is going to be unique and delicious!

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Don’t Wait:  BOOK YOUR ROOM NOW!

 

Budget Friendly:   The Econo Lodge Harrisburg/Hershey 

1006 Briarsdale Road, Harrisburg, PA, 17111 (about $64 – $75 per night)

Conference Venue:   The Central Hotel Harrisburg/Hershey 

800 East Park Drive, Harrisburg, PA, USA 17111                      Phone:  (717) 545-9595  (about $150 per night)

 The Hampton Inn, Harrisburg East (Hershey Area) – 1/4 mile from Conference Venue

4230 Union Deposit Rd, Harrisburg, PA 17111                             Phone:  (800) 644-3144 (about $130 per night)

Questions?   Contact Sandy.Simons@nutricia.com

Does your child love low protein pasta?

My child would eat pasta every day, every meal if I let him. It is great he found a food he enjoys, but I want my son to eat more vegetables and other healthy foods that provide fiber and other nutrients.

Here are some ideas to feed your child’s low protein pasta cravings, but to make your low protein pasta last longer and provide more dietary variety.

Soup 

Dicing carrots and celery (the smaller the better for young kids) and simmering in a vegetable broth with low protein pasta added is a low pro and filling lunch or dinner.   311You can use Loprofin Animal Pasta, Rice, or broken Spaghetti to keep it new and exciting.   Fresh dill adds a great ‘soup’ flavor and expand your child’s taste  palate.

Veggie Noodles 

Bulk up your Low Protein Spaghetti by mixing 278with Zucchini or Yellow Squash noodles. With a spiral vegetable slicer this only takes minutes and can really satisfy a bigger appetite.

 Spicy Vegetables over Low Pro Rice Pasta

You can do so many different meals with fresh or frozen cauliflower and carrots, which are Vegetable Curryboth naturally quite low in protein. Often, people on a low protein diet enjoy spice. Check out this recipe for Indian Curry with Loprofin Rice.

 Dish it out slow 

I often serve my son a small amount of pasta, which he gobbles up. Then ask him to eat 3-4 bites of the vegetables on his plate. Once done I serve another small portion of pasta and repeat. All children are motivated differently, but that love of pasta usually is an incentive to eat more veggies at meal time.

 Roll it up 

Kids love to eat with their hands (or at least my son does). Use Loprofin Lasagna to make a salad roll-up or other roll-up filled with veggies. Try filling a pasta roll-up with a blend of mashed potato and mashed cauliflower for a yummy kid friendly dinner entree.

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Order Loprofin Low Protein Pasta online at medicalfood.com

 

Written by Sandy Simons, MA, RD, CHES

PhenylAde® GMP Drink Mix from Nutricia

A Whole New Way to Think About PKU Nutriton

PhenylAde® GMP Drink Mix contains Glycomacropeptide (GMP), made from a whole protein source. It has a smooth, mild vanilla flavor AND is a GMP based PKU product with both DHA & Fiber.

 

PhenylAde GMP

CLICK HERE TO REQUEST A SAMPLE 

Talk to your metabolic dietitian or clinic about a PhenylAde GMP today!

DID YOU KNOW…

Nutricia has a team of Reimbursement Care Specialists to assist you in making a change to PhenylAde GMP or any other Nutricia product.  They can verify insurance benefits, help you find a supplier and more.

CLICK HERE TO LEARN MORE ABOUT OUR SERVICES

*This product is for use under medical supervision.  Please consult your metabolic healthcare professional prior to making any changes to your PKU diet plan.