Parents, I cannot emphasize enough what a huge role you have in the success of your youngster in PKU diet management as an adult. I am very grateful for the advocacy, guidance, monitoring, and support that both of my parents gave me in dealing with the diet. Today, I have a challenging professional career that I enjoy in large part due to their diligence and commitment to helping me with my diet.
My father took on the role of making my formula every day for me to make sure that I was able to access it whenever I wanted it. My mother was very willing to learn a lot of different lo-pro recipes that kept the diet from getting dull and routine. My mother helped put together one of the first PKU cookbooks with others from the Waisman Clinic in Madison, Wisconsin. At some point in early adolescence try to teach your kids some responsibility in regards to their diet as this will pay dividends for them when they are adults. It may also mean that you have to be hard on them for sneaking something that they know they shouldn't eat. They may not like you for the short term, but they will respect you and know you have their best interests at heart in the long term. Teach them how to make recipes that they will use and like and help them plan their days in terms of their meals.
In the encouragement arena for your youngster, really emphasize how important it is for your kid to take their formula or medicine. I can remember always hearing about how much better my drink was for me than regular milk was for the average person. I got the feeling that I had an unfair advantage over others because I was getting my body a better balance of vitamins and minerals than if I had had a "normal" diet. Being in sports as a kid, it meant a lot to me.
This was at the same time as getting the necessary protein without the phes.
Parents, you are the true warriors out there on the front lines of waging the battles against high phe levels. GOOD DIETARY CONTROL STARTS WITH YOU! If you have a question, ask someone who knows and continue to fight for your child's' future.