Being off the PKU diet leads to high phenylalanine (PHE) levels and is associated with a variety of symptoms, such as feeling tired, irritable and forgetful. This is how Rene felt before he went back on the PKU diet as an adult.
We met up with Rene in his home in San Diego, CA to learn more about why and how he returned to the PKU diet at age 36.
“My name is Rene and my entire life, I’ve had PKU. I was good on my diet as a kid, because my mom and aunts all helped making my food, teaching me how to cook and reminding me to take my formula. As I got older it got harder to stay on diet and one day I just gave up.”
Rene shared that the most difficult time was in his teen years, since he was completely off diet.
“I was feeling tired most of the time. It was hard to be active and I did not do well in school. It was hard to memorize stuff. I just wasn’t myself. I was always angry.”
So we wanted to know why Rene decided to come back to diet as an adult.
“One of the big motivations that I had was my daughter. I wanted to be a better role model and be there for her more. I am a single dad, and when I was off-diet I didn’t really have energy to play with her, help her with homework. When I look back, I yelled a lot, too.”
“I just decided I needed to be a better parent so I can go to work and still have energy to focus on her (my daughter).”
We know it is not easy to get back on the PKU diet after being off diet for several years, so we wanted to know how Rene did it. What were your first steps?
“One day, I said okay, I’m just going to call my clinic and make an appointment. Then I had my first doctor appointment to get on the diet and get my PHE levels down. Due to my insurance I had to drive all the way to Los Angeles, but I had my daughter with me for motivation and it was a good appointment.”
“The clinic said that there were several new options in PKU formula and they taste way better then they did when I was a kid. They gave me the PhenylAde® GMP READY so I’m like okay, I’m going to give it a try.” “The PhenylAde GMP READY was great. I actually love it. I don’t have to scoop it or anything. I can take it to work. I can take it anywhere. It’s really smooth, it’s really tasty. It doesn’t have an aftertaste.”
Rene also told us that he likes to cook and remembers several vegetarian recipes his aunts taught him as a child. He shared some recipes with us as he made lunch for himself and his daughter.
“Now that my PHE levels are back in range, I feel way better. I’m more active. I’m going to the gym, working out, playing soccer, and I also play with my daughter now, which I was not doing before”.
We were curious if Rene had any advice for other adults with PKU who may be thinking about returning to the PKU diet.
“Find a motivation and really focus on that. Returning to diet is not something that happens overnight, you do need to work at it and plan your meals a bit more than when you are not on diet. The impact is you have a little bit more control of your highs and lows when sticking to the diet. I’m really glad I did it. I feel way better.”
“You should also give PhenylAde GMP READY a try, it’s awesome, not what PKU formula used to taste like. For me it was a life-changer.”
Watch this video to learn more about Rene and why he returned to the PKU diet.
Interested in trying PhenylAde GMP READY?
Brought to you by Nutricia North America
PhenylAde GMP READY is a medical food for the dietary management of proven Phenylketonuria (PKU) and must be used under medical supervision. Always consult your metabolic healthcare professional prior to making any changes to your PKU diet.
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