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

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.

Metabolic Disorders – Talking to your young child

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.