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  • Sam Balenzano

Where's the baby?

This blog post is all about formula! In my last post I touched for a second on how I would reach for my formula after blood tests because I was starving, but also because I feel like I need it to function.


When I need to drink my formula, it's a different kind of hunger. It's not like that hunger you get between lunch and dinner or right when you wake up, it honestly feels like what I could imagine it feeling like if you needed your next hit of your chosen drug. SERIOUSLY. It's like everything feels off and out of place when you need your formula, you can't focus, your hands are shaky, you just feel off, until you drink your formula and it feels like you're a person again. (These are just my experiences, but I know a lot of PKUers feel the same way.)


What is formula?


Our formula is basically a protein drink, with all the minerals and vitamins we need to survive as humans, but the protein is already broken down into amino acids because our bodies cannot do it for us. It is literally essential to our life! I drink 3 of them a day! One as soon as I wake up, one around lunch time, and one right before I go to bed.


There are different brands and flavours of formula, so let me take you on a tour of my formula journey, starting from where I can remember.


As far back to when I can remember, until I was 21, I was on a brand called Periflex, and I was drinking the orange flavour. My parents and I used to make two days at a time, so we would weigh the formula, mix it with water in a big jug and then play rock paper scissors for whoever was going to make the next batch, because Lord knows no one wanted to do that. It was an interesting flavour, that I took awhile to get used to. My mum used to say it smelled like rotten potatoes, she was probably right. When I was younger, it used to take my hours to drink it. Now that I'm older I can suck back my formula in less than a minute haha sorry mum. I used to put this formula in those drink boxes with the plastic straw and I would put bite marks in the straw so I could hold it in my mouth and keep my hands free so I could keep doing whatever it was that I was doing and not let my PKU slow me down.


I was always super underweight, I didn't reach 100 pounds until almost grade 9. So my doctors gave me another formula to mix in with my periflex, called duocal, which is exactly what it sounds like; just more calories. I was on it for 6 months and when I went back to my doctors for my check up they said "whoa whoa whoa, you can stop taking the duocal now." I guess I was gaining enough weight!


When I got to high school, I put my formula in those stainless steel water bottles and would take my lunch time one with me. But if it sat for too long, like in my locker, or I was on the second day of formula, it would really start to smell. I would always be so self conscious of drinking it in the hallway, and it always made my breath smell really bad too. I always had gum with me but if I didn't I would feel afraid to talk to anyone. My best friend couldn't even stand with me in the hallway while I drank it because of how terrible she thought it smelled! Anyways, that was only 20+ years of my life.


Once I graduated, I had big plans to travel, and I already loved to travel and did it a lot with my family. I also was going to go to school for tourism, so I asked my dietician if there was a different kind of formula I could try that would allow me to travel easier, because bringing 30+ little baggies of white powder on a plane was not doing it anymore. I also remember a time where I was living in Alberta for work experience, and this guy told me I wasn't spontaneous enough, because I had to measure out my formula every time we wanted to go somewhere. Granted, that was a real jerk thing to say, but it still got to me enough to look for a different solution.


My dietician informed me that there was a pre-made formula called Lophlex, that looked kind of like a capri sun, that I could just unscrew the top, drink it, and throw it out. YOU'RE JUST TELLING ME THIS NOW!? Do you know how many times that stainless steel container leaked in my backpack or my purse, and I had to miss out on things to clean it up because I had to go home and get a new one? Or how many sleepovers I went to where I was afraid to ask my friend's parents if they had a fridge (A FRIDGE) so that I could put my juice (I call my formula my juice) in there so it wouldn't get gross overnight so I just drank it gross in the morning? Do you know how many times I would leave my stainless steel bottle at a friends house by accident and they would try to be nice and clean it for me and almost die from the fumes that escaped it? (Just kidding but like, almost).


This new formula was like a miracle, and if it had been out when I was younger it would have changed everything. So I made the switch, but stayed with the orange flavour. It was super acidic but it was definitely worth it. After 3 years on that stuff, my acid reflex was getting to me and they were getting really hard to drink. So I asked my dietician if there was something similar I could take. She let me try Glytactin RTD (which is one of the formulas Francesca is on, you can go read her story on my other blog called PKU Spotlight!) This was a cardboard drink box with a straw, and I had the vanilla flavour. It tasted SO GOOD! It was almost like a milkshake (I mean I think, I've never had a milkshake). This was okay for awhile, but I quickly realized that they aren't great for travelling, because the cardboard and the liquid make them heavy and they take up a lot of space. Back to the drawing board.


Just last year, my dietician introduced me to sphere. It's pre-measured powder in a sachet that you mix with water or I've heard other people make them into milkshakes and smoothies. I have the chocolate flavour that I take 3 times a day and I honestly love it. It's the best tasting formula I've had and it's the easiest to take on vacation or overnights, and it doesn't make my breath smell. The normalcy of it is probably what I like the most, because people go to the gym and drink pre-workout and different protein drinks and I think this one is honestly better than some of those. I also drink GMP which is just another sachet that I mix in to my second sphere because you're supposed to drink the same number of grams of protein in your formula as kilograms that your weight is. I'm really happy with my formula now and I think the ones that the PKU food industry is making now are way better than what they used to be.


The reason this blog post is called "Where's the baby", is because a lot of times when I bring my formula on a plane with me and I put it through the xray machine, they'll ask me what it is and I'll say medical formula. That's when they say "where's the baby?". Pretty discouraging, but you just have to remember that they don't know your life and have probably never heard of the disease before. This only happened when I was taking the liquid formulas on the plane, because you're not allowed to take liquid on planes unless its medical. That's another reason why the powdered formula is better for me!


But my point is, don't be embarrassed about drinking your formula in front of people. Don't be embarrassed to ask where the freakin' fridge is. Parents, encourage your kids by showing them that other people drink protein drinks too. Our formula is what keeps us focused, strong, and alive. Treat it with the respect it deserves.


Now I'm going to go drink mine right now!




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