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Diet-for-Life (Adult Corner), Low Protein Diet Tips, Parents Corner

Low Protein Food – Buy Direct from Nutricia!

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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.

Fun with Formula

Amino Acid Blends

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Ever wish you could just make your own formula using your favorite great tasting drink?

Well, now you can with Nutricia’s Amino Acid Blends.

This type of formula is available for PKU (PhenylAde™ Amino Acid Blend), MSUD (Complex MSD Amino Acid Blend) and GA-1 (GlutarAde™Amino Acid Blend).

Create Your Own PKU Formula with PhenylAde MTE Amino Acid Blend

PhenylAde™ MTE Amino Acid Blend for PKU

It’s simple, this style of medical food is just the amino acid (protein) part of your formula . It is virtually tasteless and ordorless. You simply MIX-IT-IN to the drink of your choice.

Seriously, it is that easy. So, yes wishes can come true!

Example:

Love drinking sports drink while you exercise or play soccer?

Why not turn that sports drink into your PKU formula and get some post workout phenyalanine-free (for PKU) protein at the same time.

Other examples:

Mix  with lemonade, iced tea, fruit punch, orange drink or anything you think it would taste good with.

There are no rules, expect you want the drink you choose to be protein-free or very, very low in in protein. You can even mix Amino Acid Blend into ready to eat foods like applesauce and tomato sauce.

Mix-It-In---Convenience-Store

Lastly, if you or your child love your current formula but have a hard time with that last serving to meet your full daily diet prescription.

Talk to your metabolic healthcare professional about adding a scoop of Amino Acid Blend to increase the medical food protein content without adding volume.

For more information about PhenylAde Amino Acid Blend (for PKU), Complex MSD Amino Acid Blend (for MSUD) or GlutarAde GA-1 Amino Acid Blend (for GA-1) visit www.Medicalfood.com or 800-605-0410 to request a sample.

 

Please note:  PhenylAde Amino Acid Blend, Complex MSD Amino Acid Blend and GlutarAde GA-1Amino Acid Blend are medical foods intened for use under medical supervision.  Please consult a metabolic healthcare professional prior to making any changes to your metabolic diet. 
PhenylAde & GlutarAde are trademarks of Nutricia North America.

Posted by: Sandy Simons, MA, RD, CHES

Sandy is a Registered Dietitian and Certified Health Education Specialist. She received her graduate training at Columbia University’s Teacher College in New York. She has been working on the industry side of metabolic nutrition for the past 12 years and is often seen at patient events around the country.

Ask the Metabolic Expert, Parents Corner

Do I really need to follow the expiration date?

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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.

Ask the Metabolic Expert, Parents Corner

Nutrition Series: Calcium & Your Child’s Diet

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Calcium is best known for its role in bone health. In fact, the body stores more than 99% of calcium in bones and teeth to keep them strong [1]. However, calcium also plays a critical role in many bodily functions including muscle contraction, hormone secretion and nerve transmission [2].

The body must maintain constant levels of calcium in the blood, muscles and cells in order for the body to function properly. Although the level required for this is small (less than 1% of total body calcium), if you aren’t getting enough calcium from your diet, the body will use calcium stored in bones to maintain these processes, resulting in bone loss.

Calcium intake throughout childhood and adolescence sets the stage for your little one’s lifetime bone health because the development of peak bone mass during these years will reduce the risk of fractures and Osteoporosis later in adulthood.[3]

The recommended intake of calcium for infants and children are [4]:

  • Birth-6 months: 210 mg per day
  • 7-12 months: 270 mg per day
  • 1-3 years: 500 mg per day
  • 4-8 years: 800 mg per day
  • 9-13 years: 1300 mg per day

The best sources of calcium are milk and milk products, soy products like tofu, leafy greens and of course, the extra calcium-rich sardines. For children with PKU or other inborn errors of metabolism, the best dietary source becomes medical food (formula) fortied with calcium, since the natural foods listed above are not permitted (or highly restricted) in a low protein diet.  It’s also important to get enough Vitamin D because it plays a key role in the body’s absorption of calcium.

This September, Nutricia launched new products for people over 1 year of age with Phenylketonuria (PKU) or Tyrosinemia (TYR).  PKU Periflex® Junior Plus and TYR Anamix® Next are an excellent source of both Calcium and Vitamin D.   Both products meet 100% of current daily recommended intake in 20 g of protein equivalent (PE) a day based on protein needs of an average 2 year old (male).   PKU Periflex Junior Plus and TYR Anamix Next also contain a multi-fiber mix to support digestive health and DHA to support brain and eye development (up to 2 years of an age).

Another important factor for bone health is regular exercise and weight-bearing activities. So make sure that your children get adequate calcium and Vitamin D and encourage them to be active.

 

[1] Weaver CM, Heaney RP. Calcium. In: Shils ME, Shike M, Ross AC, Caballero B, Cousins RJ. Modern Nutrition in Health and Disease. 10th ed. Baltimore, MD: Lippincott Williams & Wilkins, 2006:194-210.

[2] http://dietary-supplements.info.nih.gov/factsheets/calcium.asp. [

3] PEDIATRICS Vol. 117 No. 2 February 2006, pp. 578-585 (doi:10.1542/peds.2005-2822).

[4] Institute of Medicine, Food and Nutrition Board. Dietary Reference Intakes for Calcium, Phosphorus, Magnesium, Vitamin D, and Fluoride. Washington, DC: National Academy Press;1997.

Posted by:  Linda Leuffgen, RD

Medical Affairs Associate for Nutricia North America

 

 

Ask the Metabolic Expert

Why can’t I just follow a low protein diet?

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The simplest answer is because you need protein.  Following a low protein diet without formula could lead to protein deficiency. You may also lack energy and develop an array of secondary health problems.

PKU formula  provides phenylalanine-free protein.  Since all natural food, with the exception of pure fat and sugar, contain some PHE, you must watch your total food intake. If you only eat foods that are low in protein you body may not get enought daily protein.  In addition, eating larger portions of foods that are ‘lower’ in protein can still add up to up more phenylalanine than you can tolerate in a day, resulting in high blood PHE levels.

Formula allows you to take in PHE-free protein and calories to help you meet your daily needs.   PKU formula can also help you feel less hungry.   Controling hunger is important becasue despite your best efforts to only eat low protein, excess hunger may lead you to consume some foods that are higher in protein or larger portions.

Don’t forget – drinking PKU formula also provides a balance of all the other amino acids (building blocks of protein) you need plus tyrosine which is an essential amino acid (needed from food) for those with PKU.

If you are currently not drinking formula and only watching what you eat, assess the reasons why you are not going ‘all in’ on your PKU diet.

  • Are you uncertain if your insurance covers formula or have you been denied in the past?
  • Do you recall from childhood hating your formula and not wanting to drink it?
  • Just stopped re-ordering for no good reason at all?

If any of these ring a bell, let Nutricia help you.

We offer a complimentary samples and a staff of trained coverage specialist that can help navigate your insurance to see if you have coverage and help find a local supplier.

Don’t delay – getting back on track and including PKU formula in your diet will be one decision you will not regret.

Request a free PKU product sample at www.medicalfood.com

Posted by: Sandy Simons, MA, RD, CHES

Sandy is a Registered Dietitian and Certified Health Education Specialist. She received her graduate training at Columbia University’s Teacher College in New York. She has been working on the industry side of metabolic nutrition for the past 11 years and is often seen at patient events around the country. This post is based on an excerpt from My PKU Toolkit: A Transition Guide to Adult PKU Management.

Parents Corner, Uncategorized

Metabolic Disorders – Talking to your young child

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What to say to your child

While your child is not old enough to manage their metabolic disorder alone, it is valuable for them to begin to better understand their diet and treatment. When speaking with your child about their metabolic disorder, the following tips may be helpful:

  • Use simple examples to explain ideas
    For example, when explaining to your child why their metabolic diet is important, it may be helpful to relate the diet to that of a food allergy. Speak with your metabolic team who will also have information about books to read to your child to help him or her understand special diets.
  • Let your child know they can say “no”
    If you haven’t already, teach your child to ask you before eating unfamiliar foods, and that it is OK to say no to anyone who offers food that is unfamiliar or off limits.
  • Tell your child it isn’t his or her fault
    A child may not understand why he or she has metabolic disorder when others do not, and may think that he or she did something to ‘deserve’ it. Explain to your child that everyone is born with different qualities, such as hair and eye color, and a metabolic disorder is something that people are born with, not something that anyone causes. Reinforce to your child that he or she is special, and that this special way of eating is to keep him or her healthy.
  • Stay positive.
    Sending the right message about foods and treatment is important. It is better to talk about off-limit foods as “high-protein,” “no,” “red” or “stop” foods rather than “bad” or “naughty” foods. Help your child accept and manage their metabolic disorder as he or she grows. Never say anything negative about the food or formula to your child. This special way of eating is to keep him or her healthy.
  • You’re not alone
    Talk to your child about other people you know who are on a special diet, even if they are adults, so your child knows that he or she is not the only one on a special diet.   Get involved!   Go to a local metabolic or National event.

Click here to view upcoming events and metabolic support groups across the nation.

 

*Reference Source:Adapted from – My PKU Binder. National PKU Alliance. Chapter 5: Ages 3 to 6 Years, Page 41.

Ask the Metabolic Expert

New Artificial Sweeter – OK for PKU?

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FDA Approves New Artificial Sweetener

A new sugar substitute called advantame was approved on Monday by the U.S. Food and Drug Administration.  Advantame is chemically similar to aspartame (Equal), and certain people should avoid or limit their use of aspartame, the FDA noted.

These people have a genetic disorder called phenylketonuria (PKU), which makes it difficult for them to metabolize phenylalanine, a component of both aspartame and advantame. Food with aspartame must include label information warning people with PKU about the presence of phenylalanine.

The FDA evaluated whether advantame should also carry alerts for people with PKU. Because advantame is much sweeter than aspartame, only a small amount is needed to achieve the same level of sweetness.  As a result, foods that contain advantame do not need to include alerts for people with PKU, the FDA said.

Be sure to talk to your metabolic professional if they feel advantame is suitable for your diet.  Currently, the exact PHE content has not been reported.

SOURCE: U.S. Food and Drug Administration, news releases, May 19, 2014

Ask the Metabolic Expert

At what age should I introduce solid foods?

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At what age should I introduce solid foods?Feeding child

The American Academy of Pediatrics (AAP) currently recommends gradually introducing solid foods when a baby is about 6 months old.1

**Always consult your metabolic healthcare professional before introducing new foods or changing your child’s low protein diet.

How do I know if my baby is ready to eat solids?

The following tips may help2

  • Is your baby’s tongue-thrust reflex gone or diminished?
    This reflex prevents infants from choking on foreign objects, but also causes them to push food out of their mouths. Ask your pediatrician or metabolic dietitian.
  • Can your baby support his/her own head?
    To eat solid food, an infant needs good head and neck control and should be able to sit up unassisted in a high chair.
  • Is your baby interested in food?
    A 6-month-old baby who stares and grabs at your food at dinnertime is clearly ready for some variety.

What should I know about first foods?

Until now your baby is only used to liquids so it is essential that the first foods offered are a smooth, runny purée. First solids should be bland, easy to swallow and easy to digest. Your baby can progress to a thicker purée once they become used to the runny texture.

What types of food should I offer?

Check with your metabolic dietitian which foods are best for your baby.  Most parents begin with rice cereal mixed with formula and gradually introduce other foods. Homemade purées are inexpensive and easy to make. Fruit and vegetables can be cooked in a small amount of water until soft and then puréed using a hand blender or food processor. Ready-to-eat first foods and baby cereals are also available in the grocery store. Once you have introduced single purees to your baby you can try mixing different combinations for variety e.g. sweet potato and carrot, or apple and pear.

How much should I give my baby to eat?

At first, only offer very small amounts (about 1-2 teaspoons at a single meal). Gradually more food can be offered. When your baby is taking a reasonable amount of solids at a single meal (about 6-10 teaspoons) you can introduce solids at a second meal in the day and then at a third.

Suitable Low Protein Baby Foods2

6-8 Months Old

  • Apple sauce
  • Very small pieces of soft fruit
  • Some cereals
  • Soft cooked vegetables such as carrots or squash

9-12 Months Old

FRUITS

Fresh

  • Wash thoroughly.
  • Remove skins and seeds.
  • Cut into small, bite-size pieces or thin sticks (i.e. quarter grapes).
  • At one year, include unpeeled ripe fruits, berries, pears and nectarines.

Frozen/Canned

  • Look for fruits packed in their own juices.
  • Avoid fruits canned in heavy syrup.
  • Frozen fruits are soothing to teething gums.

Dried

  • Pitted or seedless prunes, apples, apricots, peaches, and dates.
  • Avoid raisins, which can cause choking.

Examples: Apple, Apricot, Avocado, Banana, Berry Grape, Kiwi, Mango, Melon, Nectarine, Orange, Papaya, Peach, Pear, Plum.

VEGETABLES2

Vegetables can be served hot or cold, but all will need to be cooked.

Fresh

  • Wash thoroughly.
  • Raw vegetables are difficult to chew, swallow, and digest.
  • Cook until tender and easily pierced with a fork.
  • Cut into small pieces, long thin strips, or grate.

Canned or Jarred

  • Be careful of the amount of sodium, choose low sodium if possible.
  • Rinse the can or jar before opening.
  • Can be served directly from the can, cut to appropriate size.

Frozen

  • Must be cooked until tender and cut to appropriate size.

**Be sure to discuss PHE or protein tracking an your child’s daily allowance prior to proving any new foods.

References:
1. American Academy of Pediatrics Web Site. Web. 03 Mar. 2010. http://www.aap.org/
2. Eat Right Stay Bright. Guide for Hyperphenylalanemia. L Bernstein and C Freehauf. Chapter 1. Pages 56-58

Low Protein Diet Tips

Eating Out on a Low Protein Diet

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Although it can be easier to prepare low protein meals at home, this can restrict your work and social activities. Fortunately, many eating places are beginning to realize that an increasing number of people follow “special diets”.

Many of the larger restaurant chains state that they will try and cater for customers on a special diet whenever possible. To get further information from a particular company contact their Customer Service helpline or check their website.

RESTAURANT TIPS

  • Try and give advanced notice to the restaurant whenever possible
  • When explaining your diet, try not to get caught up in a long list of “I can’t have” foods
  • Offer a few ideas of possible dishes you can eat and recipes if necessary
  • Ask if you can bring in your own low protein products such as pasta or pizza bases if this is suitable

EATING ON THE GO
1. Cafes/sandwich shops

Small cafes that make things up from scratch can prove useful (especially if they get to know you!).  Ask if nutritional information is available to find out ingredients /protein content of items.

Possible snack ideas

-Salad
-Fruit
-Tomatoes on toast*
-Chips*
-Jacket potato* and butter

2. Fast food outlets

Some larger, well known fast food chains, provide nutritional content leaflets  for customers in the shop or online access nutrition information.

Possible snack ideas

-Salad (if available)
-Chips*
-Onion rings*
-Hash browns*
– Most veggie burgers are NOT suitable, as they are high in protein.

3. Cafeterias at work or school

Some cafeterias can be quite flexible so it is worth asking if they can cook or re-heat some of your low protein foods. If the cafeteria food choices are limited it may be easier to take a packed lunch in.

Possible snack ideas

-Salad/vegetables
-Fruit
-Baked Potato (avoid mashed potato as it is likely to contain milk)
 *Weigh out as usual

Note: Each condition may vary in tolerance for specific foods that contain protein, even if low in protein. Always speak with your metabolic dietitian or healthcare provider before adding new foods or changing your metabolic diet in any way.

Diet-for-Life (Adult Corner)

Meet Alicia – My PKU Story

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Hi, my name is Alicia.  I am an only child who was born three weeks early in November of 1959.  At this time they had no Newborn Testing for PKU here in the United States.  However, soon after I was born my Alicia - Share My Storymother became worried.  She stayed in continuous contact with my Pediatrician.  He had just read an article concerning  the “Wet Diaper Test,” a way to test someone for PKU.

My doctor called my mother and asked her to bring me into his office because he had a suspicion of what the problem might be.  He used a stick (kind of like a popsicle stick) which was put into my diaper that would turn a green color if the test was positive for PKU.  The same afternoon of the test, the doctor called my mother to tell her that the test was positive for PKU and he was referring us to a hospital in Augusta, Georgia for further testing.  I was confirmed to have classical PKU when I was 4 months old.  There were very few infants diagnosed in the United States at that time. As you can imagine, my parents were devastated and had no clue as to what PKU was or what would happen in the future.

I was placed on a strict low protein diet and PKU formula.  I can still recall not liking the taste of the formula.   My formula was very Jerry Davis - babyexpensive, even back in those days.  My parents had insurance, but the insurance wouldn’t pay for my formula and at times my father would be working 2 jobs just to help pay for it. My mother managed everything to do with my diet from making my formula to measuring my food intake.  I seemed to be doing great over the next several years. Then, suddenly, when I was 5 years old we received a phone call from my clinic and they wanted to see me.  At this time some thought that diet was not for life and I was taken  off my diet.  I can vividly recall what I had to eat for my first meal off diet.  It was at lunchtime and they brought me some BAKED HAM!  Little did I know that this was the first bite of a lifelong struggle for me. Jerry David youngerI remained off diet until I was 44 years old (2004).  It was at this time that I decided to look into going back on diet due to some problems I had begun experiencing.  I had lost my last job due to emotional outbursts and I felt that I needed to see about trying to get some help.  I spoke with my mother and she called my old clinic on my behalf.  I can remember my mother telling me that the doctor said “Get her in here, I don’t care about the money issue.  She needs help to get back on diet.”  So within just a few days I was on my way to clinic again for help.  It was determined at that time the best course for me was to go back on the diet after having been off it for so long.  It was going to be a struggle, but for my health I had to do it. My doctor slowly took me off of all of the bad foods I had been eating for so long and got me started on Xphe Maxamum™ from Nutricia.

First I stopped eating meat and cheese over the next couple of months and then the t a little later on.  I’m currently still on diet, although I do sometimes struggle trying not to eat all the bad foods which I’ve had in past years. I know that I feel better when I’m on diet and have more energy, not to mention that my husband can put up with me so much easier. I am just so thankful for a persistent loving mother, wonderful pediatrician, great support, and a patient loving Husband. I’ve always said that, “God could have made me normal, but he chose to make me with PKU and now what can I do with that?”  I choose to help make the road a little easier for those coming behind me by doing whatever I can to spread the word about PKU. 

CLICK HERE TO SHARE YOUR STORY

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CLICK HERE TO REQUEST A FREE COPY OF “YOUR GUIDE TO GETTING BACK ON THE PKU DIET” TODAY.