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.