Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my travel tips as I prepare for an international flight.
This post is sponsored by Ajinomoto Cambrooke. I will be at the 2023 European Society for PKU and Allied Disorders Treated as Phenylketonuria (ESPKU) Conference next week with Cambrooke, producing content for social media and my podcast. They have been friends since the beginning of my PKU advocacy journey and I will tell more of that story in this post. I don’t typically seek sponsorships in my work. It has to be a product or service that I believe in and use myself. But I have been using Cambrooke formulas (I prefer to call them medical drinks, but I recognize that many still use the term “formula” so I’ll use it in this post) since 2012 and am honored to partner with them to bring you stories from the 2023 ESPKU Conference. I produced two episodes from the conference—“Finding Your Rare Disease Community” and “One Global Community”.
Traveling with PKU Formula
If you’ve been connected with me for a while, maybe you’ve noticed something. I don’t often share tips and tricks about daily management of Phenylketonuria (PKU). And that’s because there are so many treatment options available now for PKU.
The daily experiences of someone with a tolerance of about 4 to 8 grams of protein are different than someone who is able to eat unrestricted because of some of the newer treatments available. And so, generally, I talk about the universal experiences that affect us all—those of us living with PKU and even those in the wider rare disease community.
But in this post, I’m going to talk about something that is still a hot topic. Although there are some who can eat unrestricted now and don’t require PKU formula, there are many—like me—who even if they can eat more protein still require daily consumption of formula.
I’ve been involved in PKU advocacy for a long time, and have traveled across the world. And like many of us, most of my daily encounters with the PKU community are via social media. And I see this come up constantly—people want to know if traveling with PKU formula or low-protein foods is possible.
The answer, of course, is yes. Absolutely, yes.
My tolerance is high because of my medication and I don’t require low-protein food. I eat a basic vegetarian diet now. But I have been drinking formula for most of my life (there were a few years when I didn’t, and I’ll explain why in this article).
So here is my story about the formula that I drink, how I travel with it, and why I’m thinking about all of this right now.
When I Didn’t Drink PKU Formula
Let’s be honest. For a long time, PKU formula wasn’t very tasty. Perhaps you still think it isn’t. I genuinely like mine now, but when I was growing up in the 80s that wasn’t the case.
The formula I drank back then was… not my favorite, to be kind. And there’s another factor that complicates my story. Back then I was told that I might be able to go off the PKU diet when I became an adult. And so, as I grew up and became a teenager I was too relaxed with the diet. I won’t say that I completely went off diet. Yes, I tried new foods that, in retrospect, I shouldn’t have. But I still ate a vegetarian diet. I just didn’t track everything because, in my mind, I was preparing for the day when I could stop worrying about it altogether.
And I didn’t drink PKU formula. For quite a few years. That was the biggest mistake of my life.
I struggled in college. I wasn’t motivated. I was depressed. I shared more of this story on my podcast in an episode called Regaining Hope: My Journey to Rare Disease Advocacy. Other things in life were happening. It just didn’t help that I wasn’t focused on my PKU diet.
But then, in my mid-twenties, everything changed. I realized that I was tired and exhausted all of the time because I wasn’t eating properly and I wasn’t drinking formula. I lost touch with my PKU clinic for a few years. And when I reconnected with the clinic the first thing they told me about was the mantra “Diet for Life”. Or, as I now refer to it, “Treatment for Life”.
It’s important for someone with PKU to be receiving treatment for life. Maybe that’s the low-protein diet and PKU formula. Maybe it’s a newer treatment that’s available.
The point is having PKU doesn’t go away. It’s a rare disease we have for life. And it’s a burden we carry for life.
It’s easy for those of us who are connected to the PKU community to forget that there are many who aren’t connected. Perhaps they were taken off treatment at a young age and haven’t been connected to the community. Maybe they’ve never met another person with PKU their entire lives. And so, maybe they haven’t heard of the phrase “Diet for Life”.
That’s why it’s important for us to keep talking about it.
Why I Switched to Cambrooke’s PKU Formula
When the clinic told me about “Diet for Life” they told me that also meant drinking PKU formula again.
I wasn’t excited.
I remember gagging when I tried to drink the stuff as a kid. Especially when my daycare decided to pair it with food that… well, let’s just say my digestive system didn’t tolerate it well.
But I realized it was important, so I gave it a shot. And I noticed a change. I felt better. I could think clearly for the first time in years. I had energy And I felt full drinking it. But I still couldn’t stand the taste.
I tried a few different versions of PKU formula over the years. But things changed in 2012.
Shortly after I produced my film “My PKU Life” I received a message from the people at Cambrooke. They invited me to speak at an event they were hosting at their headquarters in Ayer, Massachusetts. My wife and I attended and it was at that event that I met Lynn and David Paolella.
They are the founders of Cambrooke and created the company because they have two children with PKU: Cameron and Brooke. Hence, Cambrooke. I say children… They are grown adults now. But a parent’s love for their child is unending. And the love of a rare disease parent is a fierce love.
That was my first encounter with Cambrooke. And I’ve since become friends with Lynn and David. The relationships you can form in this community can run as deep as you wish. Lynn and David are friends who feel like family.
That was also my first encounter with Cambrooke’s PKU formula. I said this at the beginning of this article, but I’ll say it again. I don’t promote or talk about something unless I believe in it and use it myself. I think that comes from my background in journalism. In my work for this community, I try to keep a firewall up between advocacy and commercial interests. Most of what I do for this community is my passion project. I write, speak, and produce videos about PKU because I love this community with all my heart.
But this is a sponsored post. And I’m writing it, first and foremost, because I use Cambrooke PKU formula, and genuinely like it.
The PKU Formula That I Drink
I’ve tried a bit of everything that Cambrooke offers. For a long time, I drank Bettermilk. It was the first Cambrooke product I used. And it was the first PKU formula of any kind that I actually liked. I would drink it plain most days—just mixed with water. Other times I would use it as a base for a smoothie. I’ve always been partial to Strawberry/Banana Smoothies. But I drank Bettermilk for many years.
Eventually, I tried Restore. And I drank it for a few years as well. But the one I was on for a long time was Restore Lite (the powdered version). I travel for work. And advocacy. A LOT. And having a powdered formula is so convenient. But I’ll share more of my tips and tricks about traveling with PKU formula later in this article.
I also used Swirl for a few years. It has the consistency of a pudding, and I was just intrigued by that. I used it when I needed extra protein and calories after completing a workout. It wasn’t the one I used all of the time, but more as a supplement for when I was doing intense workouts.
I recognize that many people grow accustomed to their formula and don’t want to try anything new. That doesn’t describe my experience, but it’s totally valid. If that’s your thing, great! If you like what you drink, you can get access to it, and your clinic recommends it for you, that’s what is most important.
But personally, I like variety. To have choices regarding my PKU formula. That’s extremely important to me. It makes drinking PKU formula feel a bit less like a medical choice and more of a lifestyle choice.
So, recently I switched to Build 20/20. I plan to stick with this one for a long time. Again, because I grew up in the 80’s when PKU formula wasn’t palatable, I am still happy and grateful to have something that I genuinely like.
It’s not a chore for me to drink PKU formula. It’s second nature. And I don’t mind drinking it in front of others.
I get that not everyone does that. For some, it’s a private matter. And that’s totally your right. What’s important is that you drink it.
Traveling with PKU Formula
This is on my mind right now because, in a few days, I’m getting on a plane and heading to the UK for the 2023 ESPKU Conference. So, I’m in packing mode!
I travel. A LOT. For PKU projects. For work. For vacations. And I’ve been all over the world.
So, here is how I handle traveling with PKU formula:
- Use Lists. Don’t try to “wing it” when you pack. Take the time to list out everything you’ll need to take with you. For me, it’s just PKU formula and my medication. But if you need to take low-pro food, add it to the list. If you need to weigh food, add the scale to the list. If you think you’ll forget, add your shaker cup to the list. Don’t take a chance. Sometimes I do, and I inevitably forget something. Even after years of traveling.
- Get a Letter of Medical Necessity. As teachers of mine used to say, “Underline this. Bold this. Star this. Do whatever you need to do to remember this.” I don’t travel anywhere without a letter from my geneticist that clearly explains what PKU formula is and why I have to drink it. It makes it very helpful when going through security and speaking to a TSA agent. I’m in the US, so that’s the agency I have to deal with. I can’t speak to security in other countries.
- Always Pack More PKU Formula Than You Think You’ll Need. If I’m going to be gone for just a few days, I’ll pack an extra day’s worth just to be safe. If I’m going to be gone for a week or more, I’ll add a couple of extra days. The point is… You don’t want to be stuck overseas or in an airport without PKU formula. Delays happen. Now, I understand that this may be difficult for those who don’t have powdered formula. I don’t have specific advice for that, because one of the reasons I use powdered formula is to make it easier to travel. I can only speak from my experience, and my experience these days is not with pre-bottled, liquid formula.
- Pack More Formula Than You Need In Your Carry-On. If you’re traveling for a long period then clearly you will need to pack most of the formula in your checked luggage. But you will, of course, need plenty on hand while you travel. So, just like with the point above, pack extra. This is, honestly, the part of traveling that makes me the most nervous. If you follow me on social media, then you know that I don’t always have the best of luck with traveling. Especially since the pandemic. I experience delays frequently. So I pack much more formula than I need in my carry-on in case there are delays.
- Consider Shipping To Your Final Destination. This is more relevant if you require low-pro food. I don’t have experience with this myself, but my wife has to eat a Gluten-Free diet. And when we traveled to Ireland years ago we had her food shipped to the house we rented. It worked out for us, and I’ve read stories of people in the PKU community who do the same. But again, I don’t have experience with this myself because I don’t eat low-pro food.
- Always Bring A Shaker Cup. I’m adding this as a reminder to myself as I pack for this trip. Because to be honest, I get lazy on this point (and not eco-friendly, which I’m trying to be more mindful of) and just rely on bottled water wherever I go. Changing habits takes time, and this is one that I’m trying to change right now.
Traveling to the 2023 ESPKU Conference
Those are just a few tips I’m keeping in mind right now as I prepare to travel to the 2023 ESPKU Conference. I will be there recording an episode of my podcast. It’s going to be a little different than what I normally do on the show.
It’s a storytelling podcast, and I frequently mention that it doesn’t feature interviews with guests. But this episode will. It still won’t be a talk show format. As I prepare for the conference, I’m thinking about the power of the rare disease community—the magic that happens when you get people in the rare disease community together in the same room.
The conversations. The laughter. The connections we make that last a lifetime.
So, I’m going to be recording some interviews. A lot of them. And will weave them into the story. Similar to what I used to do when producing a news story. Or what I do these days when I create a short documentary.
The plan is to edit the podcast throughout the week so I can post it shortly after I return home.
And if you’ve never had the chance to attend a PKU conference, or even meet others in person, hopefully, you’ll see why it’s my favorite thing in the world.
But for now… I need to pack!
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