The National PKU Alliance is proud to announce that Rani H. Singh, PhD, RD, will be the recipient of the 2016 PKU Hero Award.
Nous sommes très heureux et fiers d’appuyer la National PKU Association (NPKUA) ainsi que PCU et maladies apparentées Canada Inc. (CanPKU) avec notre défi Faites Des Pompes Pour La PCU afin d’aider à accroître la sensibilisation et d’amasser des fonds pour la PCU.
Du 2 novembre jusqu’à la journée nationale de sensibilisation à la PCU, le 3 décembre 2015, Nutricia North America fera un don de 5 $ pour chaque vidéo montrant une personne ou un groupe de personnes faisant au moins 5 pompes en soutien à la PCU.
Tout le monde peut participer! Vous pouvez faire les pompes sur vos genoux, sur vos orteils ou même contre un mur. Les personnes à capacité restreinte peuvent soulever une boîte de préparation 5 fois ou trouver une autre façon créative de participer. Assurez-vous simplement d’inclure les mots-clics #NutriciaMetabolics et #Pushups4PKU afin que nous puissions répertorier l’ensemble des vidéos. Vous pouvez aussi afficher votre vidéo sur notre page Facebook ou Instagram.
Alors, rassemblez vos amis et filmez-vous en train de faire 5 pompes pour la PCU! En plus d’aider à accroître la sensibilisation et d’amasser des fonds pour une bonne cause, vous aurez l’occasion de rester en forme et en santé. N’oubliez pas de lancer le défi à vos amis et de passer le mot.
Pour donner le coup d’envoi au défi Faites des pompes pour la PCU, voici ma vidéo. Je VOUS lance maintenant un défi : Faites des pompes pour la PCU (#pushups4PKU)!
Jeanine Kendzejeski, directrice des ventes, Produits nutritionnels pour maladies métaboliques
N.B. Pour en connaître davantage sur la PCU, veuillez lire l’excellent billet
What is PKU (disponible en anglais seulement) publié sur le blogue LowProliving.com (lien vers http://www.lowproliving.com/what-is-pku-2/ ).
Nutricia ne prend aucun engagement et, par la présente, décline expressément toute responsabilité envers toute personne physique ou morale quant à des réclamations, des dommages, des dettes ou d’autres pertes relativement au présent concours. Nutricia ne pourra, en aucune circonstance, être tenue responsable envers toute personne physique ou morale quant à des dommages directs, particuliers, exemplaires, indirects, accessoires, consécutifs ou punitifs, quel qu’en soit le type ou la nature (y compris, sans restriction, toute responsabilité quant aux blessures ou autres dommages liés, d’une quelconque façon, à la participation directe ou indirecte au présent concours), qu’il s’agisse d’une poursuite fondée sur un contrat, une garantie, la responsabilité civile absolue, un délit civil (y compris la négligence, sans s’y limiter) ou autre, même si Nutricia a été informée préalablement de la possibilité de tels dommages ou si Nutricia aurait pu raisonnablement prévoir de tels dommages. Nutricia fera un don pour chaque vidéo reçu pendant cette période, jusqu’à concurrence de 400 vidéos.
My name is David Harris. I’m 40 years old and I was diagnosed with classical PKU.
When I tasted the PhenylAde GMP product, it was very easy to drink, it was very smooth, and in comparison to other products in the market, I actually preferred it.
Formula taste is key. It’s very important, because without a good taste, and a good consistency; it’s very difficult to get down.
If it tastes good, then I’ll drink it.
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 has been improved to now provide DHA and Fiber for your child
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.
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.
Written by Linda Leuffgen, RD – Medical Affairs Associate, Nutricia North America
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.
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.
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).
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!
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.
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.
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.
by Linda Leuffgen, RD
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.
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 . However, calcium also plays a critical role in many bodily functions including muscle contraction, hormone secretion and nerve transmission .
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.
The recommended intake of calcium for infants and children are :
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.
 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.
 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).
 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
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.
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.
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:
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.