You most likely don't remember, but as a baby chances are that you underwent a heel prick shortly after birth, as a part of newborn screening. For most families this is a small detail that you never look back on. For my family, however, this changed the course of our lives forever.
Phenylketonuria is caused by a defective enzyme called phenylalanine hydroxylase. Without a properly functioning enzyme, phenylalanine from protein can build up in the blood and hinder brain development and function. In other words, I should not be eating protein rich foods, such as meat, fish, and dairy. Although this is a condition I will have for the rest of my life, the formative years of the brain are a crucial time to be following a strict low protein diet.
This is where my mom comes in. When I was a small child through the time I moved away from home, she would make special food for me. Growing up with PKU I couldn't eat regular bread or pasta, couldn't drink regular milk... the list goes on and on. Looking back on it now, I appreciate so much what she did for me and I know I was not always appreciative back then. As a child, all I wanted to do was fit in with everyone else. Having separate meals from all your friends may seem like it would make you feel special, but it makes you feel more like a spectacle.
My mom would make low protein bread from special mixes we got to manage my diet. To make it special she would sometimes put different colored food dye into it to make the bread rainbow when it came out of the oven- I thought that was so cool! I remember I was in first grade, at lunch, and my mom packed me a sandwich. I was sitting at the table with some of my friends, and some second and third graders (very intimidating to a first grader). I unwrapped the aluminum foil from my sandwich to find that she had made it with the rainbow bread. Someone sitting next to me saw it and got the attention of the whole table. An older kid sitting at the head of the table yelled "look, he's got rainbow bread!" I can clearly remember him and all the kids at other tables turn their heads to look at my special sandwich. I had never wanted Wonderbread and bologna more in my whole life.
This is the first time I remember feeling that I was different from most kids my age because of PKU, and that feeling never really went away. I admit that I have not been managing my diet as well recently as I should be, and that is part of why I am starting this blog. When I first moved away from home to go to college was the first time I had to manage my low protein diet on my own. Being on a college campus, providing for yourself for the first time is very different from living at home. I started to give in to the food, ready for taking, at the cafeteria and started to loosen on my diet. Again, I just wanted to be like everyone else.
As a part of my treatment for PKU, I have to drink a formula every day. Basically, it replenishes my body with what it looses by having the defective enzyme. Luckily for me I love the taste of the formula and have never had a problem drinking it. College was the first time I really drank the formula around anyone except my family. Naturally, I wanted to hide it because I thought people would find it weird or different. I drink my formula throughout the day, so I will usually have a bottle of it sitting out. So it was only a matter of time before people started to see it.
Of course people thought it was "different," but not in a weird way. As more of my friends learned about my PKU and what I was drinking they seemed interested in it since they were unfamiliar. Over time, it just became a fact of life that I had PKU and had to drink this strange orange mixture.
There are definitely struggles living with such a condition. It is hard to grow up having to be different from others. It is frustrating to know that the reason I don't feel as focused, or am more irritable, is because I ate too much protein. All I wanted was to eat a burger! Is that too much to ask!?
With this blog, I will share anecdotes of my life growing up with PKU and dealing with PKU as an adult. Hopefully I can get myself back on a better track with managing my low protein diet this way, and I also hope that families who are raising a child with PKU can take comfort hearing from someone who has been through the struggles.
I'm looking forward to me next post already! :)
- Christoph
That is me on the left, with my fiance Molly. We're getting married this summer!
Thanks for starting this blog. Our 3 month old daugher has classical PKU. I look forward to following you and picking up some tips/advice along the way.
ReplyDeleteHi Eddie!
ReplyDeleteThanks for following! Do either you or your wife have PKU too, or is this a first time experience for your family?
This is a first time experience in dealing with this. Up until 3 months ago, we've never even heard of PKU. We've learned so much in these past few months about this. But the real challenge is yet to come when our daughter Norah starts eating solid foods.
ReplyDeleteIt is definitely a challenge, but starting early and making sure your daughter understands what PKU is and what she can and cannot eat is very important. When kids are very small it is so much easier to get them to do what they are supposed to. When I entered my "rebellious" phase of wanting to eat high protein foods, I still knew and understood why I had to follow the diet because it was so ingrained in me at a young age.
ReplyDelete