PKU.com Community Discussion Forum Parent support Anyone know about Kuvan? Reply To: Anyone know about Kuvan?

#7307
Avatar of Breanna
BreaMarie91
Member

My doctor hasn’t said much on the topic of trying meat because it hasn’t been brought up with her. I did speak with my dietitain about eating meat, but not because I wanted to try meat. I was afraid she would want me to eat meat lol! I told her that I never wanted to eat meat for many reasons and she said that was fine with her. She also said she thought it was a better idea not to try meat to begin with because even though I went from 300 mg of phe to 1000 mg of phe, she said eating something like a hamburger or a hot dog would still be such a big portion of my daily allowance, that it wouldn’t be worth it. She also said meat is an aquired taste, she said she doubts I would like it.
The truth is, I don’t think I would like it either, which is one reason why I opted to not at meat even with Kuvan. I ate bacon on accident about 2 years ago (it was on a salad and I tried to pick it out, but missed a piece), I was far from impressed with the taste.
When I first started Kuvan it was hard to change how I ate. Like you said a lot of foods have been considered ‘forbidden’ foods while I grew up. When I first started Kuvan and was allowed to eat more I was thrown so much phe that I didn’t know what to do with it all. It was just weird eating things like bread and pasta which I never would have even thought to try before. The truth is even now I find myself mainly eating low pro foods because that’s what I’m used to, I usually fill up my phes with regular bread, tortillas and adding milk to my formula.
Sometimes if I forget to take Kuvan I do get a headache if I don’t take it before around lunch. Besides that I haven’t really had any side effects.
Breanna

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