You can always add more protein to your child’s diet, but cutting back is extremely difficult.
I have never eaten a hamburger. Ever. In my life. It’s true! And do you know what? My life is still perfectly alright.
Having to follow such a strict diet might seem unimaginable to a parent of a child with PKU. But sticking to it is, as you know, extremely important for their health, and the more consistent you are the easier it will be for your child to stick to it. As someone with PKU I can say that I don’t know life any different. I am totally used to my diet. There was never any other option presented to me, so I don’t know what I’m missing, so to speak. That is why it is so important to never cheat.
My mom has often told me horror stories from PKU clinic parent group where other moms would describe how the grandma, or the babysitter, or even a parent felt sorry for the kid and gave him ice cream, or much worse, bacon. That child would forever more crave bacon! Some say it’s cruel to deprive a child of such foods, but I think it’s cruel to let them have a taste of something they can’t eat and that will cause such damage to them if they continue to eat it!
I am so grateful that my parents did not feel sorry for me and made no exceptions. Granted, it may have helped that my personality was such that I never had any desire to rebel against the diet. In my family we had dinner together every night. My mom (bless her heart!) made a normal meal, as well as a low-protein version of the main dish. We all had fruits and veggies though. And as my mom says, “It’s not what’s on your table, but who’s around it that matters.”
This diet can be pretty limiting. You may worry that your child is hungry. This is why the formula is so important. I came from a PKU clinic that took a “formula first” approach to the diet. That means you consider the formula as the primary means of nourishing your child, for both calories and nutrients. Then you supplement with fruits and veggies and whatever other foods they can tolerate, using low-protein foods whenever you can.
This may seem so tough when you are a new parent trying to deal with this diagnosis and all the stress that brings in addition to having a child. But you can do it! My mom did it, and so many others, such as the family of little Cooper.
Being strict in the early years really pays off. First of all, it’s most important during this time when the child’s brain is still developing so much. We now know of course that the diet should be followed for life. This is what I have always been told and plan on doing. I will say that things get a little less strict as they get older. Now, I’m not condoning letting your child have free reign of protein foods once they’re a teenager — that causes serious problems and set backs in your child’s intellectual and emotional development. I’m saying if you strictly follow the diet and work closely with your child’s physicians and dietitians I think you’ll find that your child will tolerate more protein as they get older. Like I said, I’ve never had a hamburger, but after I graduated from high school, with the support of my PKU Clinic, I started eating normal bread (white bread with only 2 g of protein) for the first time and it was exciting!
What I’m trying to say is that if you follow the diet strictly it can only get better. If you cheat along the way, it will always be a struggle for your child to follow the diet. They may suffer cognitive and emotional problems.
I have followed the diet all my life and I think I probably take for granted how much it has blessed me. I was always in advanced classes as a child and as an adult went to college to get a bachelor’s degree. I have now been able to have a perfectly healthy child of my own. My diet has never been a burden, just a reality that makes me unique and has allowed me to live the life I want to live.
I have written this post mostly for young parents just starting out. I realize there are parents out there who have done everything they can and their child still struggles to follow the diet. You are doing wonderful! I hope I haven’t offended anyone. I know every family, every child and every situation is different. I hope my story can help those young parents who are looking to the future wondering what their child’s life will be like and give them hope that it can be wonderful.