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Category Archives: Parents Corner

Tips for a Low Pro Friendly Thanksgiving

fb-thanksgivingThe holidays can be a tough time for many people, especially those on a restricted diet. The most important thing about managing PKU, any other inborn error of metabolism or a low protein diet during any holiday season is to plan ahead.  The more you know in advance, the better you can plan.

These are some questions to ask:

  • Where will I be spending the holidays and how long will the trip be?

  • Do I have enough formula so I do not run out over the weekend?

  • Am I dining at home or at someone else’s home?

  • Will I be making the menu or someone else?

Once you know more about what your day/weekend will consist of, you can make a plan.

One key thing to plan in advance is the menu.  If you are not dining at home, but at a friend’s or relative’s home, it will be important to ask what is being served, then…

  • Ask if you can bring a side dish (one that is low protein for you, but enough for everyone to share).

  • Let them know about your dietary needs so they can omit or serve items on the side that are not low protein friendly, like cheese or bread crumbs.

  • See if you can access the kitchen to re-heat or make additional items for the holiday meal.

 

Get Creative!

Many traditional holiday favorites can be modified to reduce the protein, while still keeping the taste and texture you and others love. Here are some recipes with small changes to lower the protein content — they are sure to become family staples at your holiday meals:

Reduced Protein Mashed Potatoes

2 cups (248 g), Cauliflower, florets
2 cups (312 g), White potato, peeled and cut into pieces
1 cup (156 g), Parsnips, peeled and cut into pieces
¼ cup (56 g),Non-dairy creamer, liquid
2 tablespoons (28 g),Margarine, dairy-free
To taste (2-3 g), Salt and pepper

Directions

  1. Boil potato and parsnip in a large pot until they begin to soften.
  2. Add cauliflower and continue to cook until soft and tender.
  3. Drain water.
  4. Place all ingredients in a food processor and blend until smooth.
  5. Salt and pepper to taste.

Makes 7 servings  (115 g per serving)

Protein 2 g     P HE 67 mg        Calories 105

End your holiday meal on a sweet note with this  low protein apple cobbler for dessert.  This is a dish everyone at your holiday gathering is sure to enjoy!

Low Protein Apple Cobbler

8 cups (880 g), Apples, peeled, cored, sliced
½ cup (110 g), Brown sugar, packed
1/3 cup (67 g), Sugar, granulated
¼ cup (28 g), Corn starch
2 tablespoons (31 g), Lemon juice
½ teaspoon (1.3 g), Cinnamon
½ teaspoon (1 g), Nutmeg
1 can (400 g), Maddy’s Homestyle Sugar Cookie Mix
8 tablespoons (1 stick), Margarine, dairy-free

DIRECTIONS

  1. In a large bowl, combine Maddy’s Homestyle Sugar Cookie Mix and margarine.
  2. Blend until mixture is fully combined (resembles coarse crumbles)
  3. Set aside
  4. In a second large bowl, combine all other ingredients.Stir.
  5. Place apple mixture into a greased 9 x 12 inch pan.
  6. Spoon cookie mixture over top of apples, evenly.
  7. Bake at 375° F for 35-45 minutes (until apples are tender and topping is lightly browned.)

Makes 12 servings  (124 g per serving)

Protein 0 g        PHE 8 mg         Calories 215

And most of all…

Holidays do not have to be all about food.  Make your holidays memorable with family traditions, such as a family football game or checkers tournament.

Happy Thanksgiving from

Nutricia_Metabolics_Logo 2

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

Halloween Fun for A Low Protein Diet

Trick or Treat?   When your child is on a low protein diet for a rare inborn error of metabolism, such as PKU, MSUD, TYR or HCU, sometimes the tricks feel safer than the treats.

Halloween celebrations that center around candy, food and snacks– can be tough for kids on restricted diets (and tough for parents who want their children to full enjoy the festivities).

But it is possible to have fun AND stay on a low protein diet this Halloween. Check out a few tips, resources, and recipes to help you make it a healthy and happy Halloween.

Safety First:

  • Be sure to talk with teachers and other parents about what your child can and cannot have at Halloween parties or school activities.
  • Talk with your child so that he/she understands the importance of staying on diet and knows to check with you to determine if a particular food or candy is safe.

Now to the Fun Stuff:

  • Get creative with Halloween giveaways. 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 hunt.
  • If there will be cakes or cookies at the party, take low-protein treats for your child to enjoy so that he/she doesn’t feel left out (Check Out Maddy’s Sugar Cookie Mix)   
  • Consider having a “swap-party” where your child can swap candies he cannot have for “allowed” candies. This way everyone gets what they want!
  • Make your child’s PKU formula festive! Serve it in a Halloween-themed cup, use fun straws, or add some orange food coloring.

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

 Facebook Page:  @NutriciaMetabolicNutrition      Instagram:    #NutriciaMetabolics   

 

More Resources:

The PKU Clinic at the University of Washington has some great sources. Check out their Halloween PKU Food List.

Jack O’Lantern Cupcakes

jack-o-lantern-228Surprise that special someone or treat yourself to a Halloween cupcake that will put smiles on faces. These cupcakes are great for home, work or school parties. They are low in protein but BIG on fun.

 

Ingredients

  • 88 g (3/4 c.) Loprofin Baking Mix
  • 1/4 c. white sugar
  • 1 tsp. egg replacer
  • 1 tsp. baking powder
  • 2.5 ounces of water
  • 1/4 c. margarine
  • 1/2 tsp. vanilla extract
  • 4 drops orange food coloring
  • 1/2 c. white cream icing
  • 20 candy corns

Method:

  1. Preheat Oven to 350° F
  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. Place tablespoons into small paper cups and bake for approximately 10-15 minutes.
  6. Let cool on a baking rack.
  7. Decorate with icing and 2 candy corns per treat.

Serves 10

Nutritional Information Per serving Per recipe
Calories 150 1508
Protein 0.1 g 1.1 g
Phenylalanine 3 mg 30 mg
Leucine 6 mg 60 mg

 

What is PKU?

What is PKU?

PKU is short for Phenyketonuria. PKU is a genetic disorder that a child inherits from both parents. For a child to be born with PKU both parents must either be carriers of PKU or have PKU, which means they carry at least one PKU gene.

PKU occurs due to a deficiency or absence of the enzyme phenylalanine hydroxylase (PAH), which interferes with a person’s ability to metabolize or process the amino acid phenylalanine (PHE) into tyrosine, another amino acid. Amino acids, like PHE, are the building blocks of protein found in food and the human body. Consuming too much PHE from food can lead to a toxic build-up of PHE in the blood and brain of a person with PKU. Without treatment, this buildup of PHE will cause irreversible brain damage.

Presently, there is no cure for PKU, but it can be managed effectively with proper diet and special nutritional formulas designed for persons with PKU.  View products.

Incidence of PKUAutosomalRecessiveInheritance

In order for an individual to have PKU, both parents must pass along their PKU gene to their child. When both parents are carriers of PKU, there is 1 in 4 chance with each pregnancy that the child will have PKU, 1 in 2 chance of the child being a carrier, and 1 in 4 chance that the child will neither have PKU nor be a carrier.

It is estimated that one out of 10,000 live births has decreased PAH activity(1). Autosomal Recessive Inheritance Normal Gene Carrier Non Carrier Carrier Carrier PKU Carrier PKU Gene Phenylketonuria (PKU) *Phenotype- observable traits, outward appearances, development or behavior.

Newborn Screening for PKU

Newborn screening for PKU began in the US and Canada in the 1960s. It is important that an infant is diagnosed and managed with diet within days after birth to prevent permanent negative effects from PKU.

Nutricia provides a range of PKU formulas and low protein foods.  Learn more online at www.MedicalFood.com or contact us at (800) 605-0410 for free product samples.

Maternal-PKUfamily

Your dietitian will help you decide which products are best.

Nutricia is a proud supporter of PKU Awareness Month and the National PKU Alliance

Nutricia is a proud supporter of PKU Awareness Month and the National PKU Alliance

References
1. Vockley J, Andersson HC, Antshel KM, et al. Phenylalanine hydroxylase deficiency: diagnosis and management guideline. Genet Med. 2014;16(2):188-200.

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.

Loprofin_Pastas

 

Order Loprofin Low Protein Pasta online at medicalfood.com

 

Written by Sandy Simons, MA, RD, CHES

PhenylAde™ GMP from Nutricia

A Whole New Way to Think About PKU Nutriton

PhenylAde™ GMP 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.

 

PKU Lunch Tips for Back-to-School

by guest blogger – Katie Maquire

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. PKU children are no different. This can begin at a young age when you are grocery shopping or prepping food together in the kitchen.

PKU Friendly Lunch Tips for Back-to-School:

  • Pack lunch in fun, colorful containers in all different sizes.

  • Use an insulated lunch tote with ice packs to keep food and formula cool.Kids%20Lunch%20Tote

  • 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 Maddy’s Low Protein Sugar Cookies.

  • 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 PKU formula Back-to-School with Periflex LQ - TEENSif unable to mix formula at school.*

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

Katie Maguire is an adult with PKU.  She is currently a second grade school teacher.

*Important:  You must consult a metabolic healthcare professional prior to making any changes in your child’s PKU diet plan.

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Looking for a new Back-To-School PKU Formula?  For a limited time:

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PKU Periflex Junior Plus – Tips for Transition

Nutricia recently launched PKU Periflex® Junior Plus, a new addition to the Periflex family, with the goal of providing the best in PKU nutrition to your child. Towards this goal they have improved Periflex® Junior based on latest medical and scientific knowledge.

PKU Periflex Junior Plus - PKU Formula for Children

Available in Berry, Orange, Plain and Vanilla

Learn more about PKU Periflex Junior Plus

PKU Periflex Junior Plus has been improved to now provide DHA and Fiber for your child

  • DHA is an omega-3 fatty acid found to be lacking in the typical PKU diet
  • Nutricia’s own patented Multi-Fiberblend was added to help support your child’s overall gut health.

DID YOU KNOW IT CAN TAKE SEVERAL ATTEMPTS FOR A CHILD TO GET USED TO A NEW FOOD OR PKU FORMULA?

For some kids, a change in formula can be challenging. Some kids may need to try new foods/formula many times before acquiring a taste for it. So please be patient if that is the case with your little one.

To help we have created the PKU Periflex Junior Plus Activity Book.

PKU Formula Activity Book

Help your child transition to PKU Periflex Junior Plus with this fun, interactive activity book

Call 800-605-0410 to request a FREE Copy

Be sure to talk to your dietitian or clinic about a transition plan. They can provide a plan that will guide you step by step to make a slow and stead move to the new product by mixing  the new product and current product together to aid your child in making a successful change to PKU Periflex Junior Plus.

Request a Sample Now

Written by Linda Leuffgen, RD – Medical Affairs Associate, Nutricia North America

Low Protein Food – Buy Direct from Nutricia!

There are a growing number of options when it comes to low protein food.  One of your options includes buying direct from the company, which could add up to a cost savings for you.

For example, Loprofin brand pasta by Nutricia is available online in more than one place, but buying direct from Nutricia’s website www.medicalfood.com provides up to a $2 per box savings per box compared to other online low protein food shops when purchased by the case.*  This can up to BIG savings when buying 6, 12 or 24 boxes in one order.

Loprofin_Pastas

Quantity per unit is also another important item to explore.  Some products may appear similar in nature and have the same cost per unit.  But with a closer look you may see that one product unit may only provide 10 oz  while the other supplies 16 oz.  You want to compare you prices by ounce or gram to determine the best value for your money.

Next time you are ready to place a low protein food order, compare the volume and cost.   Also consider buying direct from the company and registering on their webistes for special offers and promotions.

 

Written by Sandy Simons, MA, RD, CHES

Sandy works for Nutricia North America.

*based on prices published online by PKU Perspectives as of September 22, 2014.  Varies based on product.

Do I really need to follow the expiration date?

by Linda Leuffgen, RD

It’s now 2015 and you see those expiration dates creeping up.

“Is expired product still safe to use?”

We get this question a lot. Our advice is not to use a medical food or low protein food product past its’ date of expiration. Let me explain why as a lot of factors go into determining an expiration date for all food; not just for Nutricia products.

First is the reliability of the packaging materials. We need to make sure the product inside that packaging is safe until the expiration date. Second is the stability of the ingredients in the product. For example, some fats go bad faster than others. We want to ensure the product you consume is fresh which is indicated by the use by date.

Another determination for expiration dates is to ensure the nutrients in the product are true to the levels marked on their label. Nutrients, especially vitamins, have a tendency to naturally break down over time; some faster than others. It is extremely important that the right amount of each nutrient is in the product since these formulas tend to make up more than 50% of your nutritional needs. We conduct extensive testing under a number of conditions to ensure that the nutrients hold up until the date of expiration.

Nutricia’s goal is to bring you the best nutritional products possible. The intent of an expiration date is to keep our consumers safe and ensure they receive the nutrition they need. Again, we cannot recommend using any of our products past their date of expiration. We suggest discussing this further with your healthcare professional if you have expired product at home and require further questions.