Dealing with the PKU diet as a family
note: this post was originally written for and posted on the Metabolic Disease Foundation’s blog about PKU
One of the biggest concerns I have heard when talking to parents of PKU children, is how their child will deal with being different. Today I will share my perspective, writing to both parents and PKU children, and that is that it’s ok to be different!
Don’t Be Self-conscious
I know what it’s like to have low-protein food at a pizza party, or to simply have to skip out. I know how it feels to be drinking formula at your locker at school, hoping no one is looking at you. Having PKU brings a lot of questions, because food is a big part of social life. It is easy to feel a bit self-conscious when people notice your special food and formula. But something my mom told me when I was younger has always stuck with me: “If you don’t care, they won’t care.” There is really nothing to be embarrassed about. You just eat differently. And these days there a lot of different dietary needs out there. I have found PKU to be a great conversation starter, and I have come to somewhat enjoy being able to talk about myself a little bit when people are curious.
As someone with PKU in this generation we are really so blessed to have been diagnosed and treated at a young age. The development of the low-protein diet and the medical formula allow you to get all the nutrition you need and avoid brain damage! That’s huge, so remember how lucky you are, and be proud to explain your diet.
Let Your Child Explain Their Diet
I don’t remember a time when I didn’t know what PKU was and how to explain it. From a very young age I could tell people about my condition, and answer their questions. This gave me a sense of confidence, pride and ownership that I think is very healthy. Parents may want to consider letting their child explain their PKU diet as early as possible, even though it might be easier for you to explain it. This will build their confidence and I think make them more likely to follow it throughout life.
Do Your Own Thing
When you or someone in your family has PKU, you have to figure out what works for you, and do it.
Some parents enjoy cooking and go to great lengths to make low-protein dishes that look almost exactly like normal food – such as a low-protein drumstick on a real bone. That is great for them and really impressive. I would just make sure if your PKU child is very young that they understand that their food is indeed different, and they cannot eat the real thing, as it will cause damage. Also, I would make sure your child doesn’t feel like they need to hide that they have PKU. Again, it is very important for them to have that confidence that PKU is an important but small part of their identity. As someone with PKU, you are unique, and that is wonderful!
In many cases, as another PKU blogger wrote about in his post, A Life of Alternatives, a person with PKU will simply have to eat something completely different than those around them. And that’s ok! I remember times when my youth group was eating hot dogs or something, and I was eating a microwave bowl of Thai Kitchen Spring Onion soup. I liked what I was eating, they liked what they were eating, everybody’s happy!
So my advice to families is to do your best to make a low-protein version of your family meal, but every once in a while, if the PKU meal is totally different, that’s alright. My mom did a great job of making low-protein versions of what our family was having, and more importantly, she always served a fruit and a vegetable at dinner.
Live a Beautiful Life
In the end, having a loving and supportive family is what is going to make the biggest difference in a child’s life – I know, from experience. My family ate dinner together every night growing up and that helped us be really close. As my mom says, “it’s not what’s on your table, but who’s around it that matters.” I may have had days when I was embarrassed about my formula, or upset about my low-protein diet, but those memories simply fade in comparison to all the memories I have of spending time with my family – eating dinner, going on bike rides and nature hikes, and traveling internationally.
I have lived with this disorder since birth, and not just in spite of it, but even because of it, I have had a beautiful life. I would like to tell everyone with PKU to embrace your diet as a unique blessing, and reap the benefits. There is nothing that can stop you from having the life you have always wanted.