Attitude · Living with PKU · Science

Huge changes + Kuvan news

Between my husband’s graduation, a cross-country move and a new PKU treatment, the last few months have been exciting and eventful for me! We have recently moved from our four-year home in Tempe, Arizona to Columbus, Ohio, and it has been quite a journey!

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In April my husband passed his dissertation defense with flying colors. Hallelujah! I was so proud of him.
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In May he graduated with his PhD in mechanical engineering from ASU. He worked hard and was blessed with great success. One thing I love about him is he lives by his priorities, and he puts God and family first. He served in a leadership position at our church, supported me and our two girls, and managed to write 9 publications about his research. No small feat!
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This summer he begins a post-doctoral fellowship at The Ohio State University, which is what brought us here.
After celebrating graduation with friends and family, we packed up our two-bedroom apartment, loaded it into a POD and headed out on a two and a half week road trip across the country, stopping to visit family along the way.
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My second daughter, Abby, the mountain goat, enjoyed having a living room full of boxes to climb
All things considered, it was a perfect trip. Our family was situated just right so that we never had to drive more than 10 hours in a day. We really enjoyed staying a few days at each stop to reconnect and relax before hitting the road again. We stopped in Salt Lake City, UT, Boulder, CO, Manhattan and Paola, KS, and Quincy, Illinois, before finally arriving in Columbus. For more pictures of our trip you can find me on instagram @elisaskidmore .
Now we are in our new place. We have almost finished unpacking, have begun decorating and have planted an herb garden. Our little rental house is starting to feel like a home! Now that we’re more settled and I have time to write a blog post, I want to share my most recent PKU news.
Sometime before graduation I decided to finally try Kuvan. It may seem crazy, but before then, I honestly hadn’t really considered it. As I’ve often said, PKU has never been a huge challenge for me, so I wasn’t very motivated to try it. Plus, it just seems so unfair to me that it doesn’t work for everyone with PKU (though I understand the scientific reason for it), and that those who could especially benefit from a more liberalized diet — people with classic PKU — are very unlikely to respond. And then there is the fact that part of my identity in the PKU world is that attitude is everything in managing this diet, and taking a medication to make my diet easier didn’t seem to fit with that image.
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So why did I decide to finally try it? Well, PKU hasn’t been a huge challenge for me, until having a family. Trying to not only cook for myself but cook for my husband, and then one and then two little munchkins, was getting stressful. It can be difficult to motivate myself to cook food I can’t eat night after night. And then there is the kids factor, where it’s all you can do to get them to eat a decent meal, and having different food on mom’s plate can be distracting and complicate things. Add to that the general stress of being a mom, and I was ready for an improved diet. So even though it was crazy timing to do a Kuvan trial right before moving, I felt like it would be worth it if I responded, so that I could eat more protein as we traveled and then  beyond of course.
The good news is, I responded! I have only known this for a few weeks, so we are still in the experimentation phase of determining how much protein I can tolerate. I have started eating normal pasta (so nice to only have to cook with one pot!), whole grain bread, and now even cheese. The cheese I had to get used to, but it is super convenient to not have to leave it off of everything I order at restaurants. I can have veggie pizza now!
I share this just as an update on my PKU life. I sincerely feel for those who do not respond to Kuvan and who are still struggling with managing their diet. I hope and pray that new and improved treatments will come to the market soon! I have always had a positive outlook on PKU, but in recent years, being a mom has changed me. Adult life is hard, and sleep-deprivation causes depression in me, so I have more empathy for those who struggle with mental health and emotional stability. But let us press forward and stay PKU-strong! I will still be here cheering you on, and sharing tips and thoughts for having a positive experience with PKU.
In the mean time, happy PKU-ing!
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7 thoughts on “Huge changes + Kuvan news

  1. That’s really awesome news, I remember you asking me one of the last times we got together before you moved if I ate my meals standing, and you realized it was probably a result of pku because the kids wanted what you were eating, so if this can help relieve some of that random stress then awesome. How does it work? And is the picture of the pill box one day worth of pills?

    1. Thanks! Yes I take 11 pills at dinner each day. You know what, I think I’ll write a whole post explaining how kuvan works because I’m sure a lot of people want to know.

  2. Dear Elisa,

    good to read from you – and somehow it is relieving to see, that I am not the only one struggling with keeping up a fancy PKU diet while needing to cook for husband and son, too 🙂

    I wonder whether you have classical pku? How was your daily tolerance and your blood level before kuvan? Each time I would talk about Kuvan in my hospital, they would tell me that Kuvan wouldn’t work for me since I have classical PKU.

    Love,
    Katie

    1. Hi!

      I don’t have classic Pku. My tolerance was 800-1000 mg Ph or about 20 g of protein a day before and my levels were usually between 1 and 3. Like I said, I know it’s not fair! I wish it could be easier for you. Will they let you try kuvan? It is unlikely that you will respond because the drug helps the PKU enzyme, which in classic PKU is usually not working at all from what I understand, so the drug does no good.

      Keep up the great work with your diet and cooking! I know it is hard. You are a trooper! Have you read my post highlighting a youn woman with c-PKU? She is actually on kuvan.

      https://www.google.com/amp/s/meupku.wordpress.com/2015/04/28/interview-with-alissa-doerner-a-classic-pku-story/amp/

      1. Upon further research, according to the KUVAN website you really can’t know until you try, because it has worked for some people with mild, moderate and severe PKU. So you should try!

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