I didn’t know it at the time, but I have been blessed in my PKU journey. I am 30 years old. Growing up, I remember drinking my formula, circle bread that came in a can, low pro pasta, and making simple recipes from the Low Protein Cookery recipe book (Quick Pizza Crust was a regular!) . My younger brother also has PKU so that made it a little easier too. Our family was always very supportive of our diets (thank you mom and dad for all of your hard work!). Aunts and uncles always made sure there was something for my brother and I to eat during get-togethers. When I was in 2nd grade, I spoke at our state’s capitol and saw the governor sign into law the mandated coverage of formula and low protein food from the state (not just mandated insurance coverage but the state will now give each patient a yearly low protein food allowance). I didn’t realize at the time how big of a deal this would be. The biggest challenge growing up was being around friends and having to restrict what I ate, or eating what seemed like incomplete meals to them. Whenever I got the courage to tell someone about PKU saying “I can’t eat protein. No meat, dairy, limited grains, etc.” I got the same response almost every time, “I would die if I couldn’t have [insert food here, pizza, cheeseburger, etc.].” I then pointed out, since I’ve never had it, I have never missed it. After that initial “shock” people seemed to not make a big deal out of it. As I grew older it got easier to tell other people.
When I got into college and joined the social media world, I learned how lucky I was. That was the first I had “seen” the effects of being off diet and what it did to other people – some just a little older than me. Not only have I been on diet for life, I had easy access to low protein food and formula. Until that point, I had no idea how hard some people fought their insurance for some type of formula coverage.
After entering college not knowing what I wanted to major it, one of my friends suggested taking a nutrition class. Then it dawned on me, why had I not thought of studying dietetics earlier? I went on to earn my BS in Nutrition and Dietetic Sciences, completed my dietetic internship, earned my RDN credential, and earned my MS in Nutrition and Health Sciences with my thesis focusing on PKU management.
I met my future husband in college. He was always supportive of me and made sure there was plenty for me to eat wherever we went. (He also enjoyed the fact that my meals were cheaper haha 😉 ) Now, we have been married almost 6 years and have 2 children – my son is almost five and my daughter is almost three. Unfortunately, we had to move out of state so I no longer had super easy access to food and formula and I had to leave the clinic I loved. At least my current insurance covers 90% of formula so that is manageable (but no coverage for low protein food), but it’s been okay with buying minimal amounts (I use Cook For Love a lot! Those are the best recipes with only having to special buy 1 ingredient- wheat starch!) so I’m still lucky in that regard.
I would have to say one of the hardest parts of having PKU was being in super tight control while pregnant. It was always hard for me with my morning sickness which seemed to last longer than it should. Normally, my tolerance was 6 grams of protein a day. My second pregnancy I had to go down to, I think two grams of protein for a few weeks. On the other hand, pregnancy also becomes the best part as towards the end of the 9 months, my tolerance skyrocketed. I’m pretty sure I was up around 40 grams of protein a day. I took full advantage to eat some of my favorite higher protein foods! After that though, you’re back to your old tolerance. It seemed impossible to take care of a newborn and keep my levels in check. My worst PKU phase lasted a good year or so after my youngest was born. I knew my levels were high and just didn’t take a level. I was just in survival mode most of the time. This is a difficult part of PKU also – it becomes a bad cycle – high levels made it super difficult to have motivation to get back on track thus continuing to have high levels. I didn’t feel super sad all the time, but it was rare to feel that burst of happiness that I was used to. My levels weren’t sky high, but high enough that something had to change. It was so hard to make that change with a newborn and a toddler, just making sure I ate something – anything that was on hand. Plus I hadn’t heard from my local clinic in a long time. It was actually a phone call conversation from my previous dietitian that helped create that spark of change. Even though I had moved away we had still kept in contact (even though she is busy, she still checked in with me every now and then! She’s so amazing!)
My daughter is almost three years old and it’s been a lot better now. I started putting myself as a priority and after levels came down, it was easier to manage everyone. I take it one day at a time. I’m not perfect; I slip up on my diet, forget to take some formula sometimes, or just sneak in a bite of something I’m baking for the kids, but I then I start over and know once I take care of myself (and my levels) it makes it so much easier to enjoy my family!
1) Me and my family – my husband Nathan, me, Logan (4 years old), and Keira (2 years old)
2) Keira and I eating our Mickey waffles. I have my Cook For Love waffle and she has her favorite chocolate chip waffle!