Community Discussion Forum New to Hello All Reply To: Hello All

Avatar of Breanna

Hey Valene,
I don’t really know what my phe level was at birth when I was diagnosised with PKU, but I know it was much higher then 8mg/dl like Tanner. I am now allowed 300mg of phenylalanine (which is roughly 6g of protein) a day. BUT I am on a new drug that is in study and so with this drug I am allowed 680mg of phe (as of right now).
My mom always told me that my body was born a little bit differently. My mom has a severe peanut allergy so she sometimes compared my PKU to that. She never said PKU was an allergy because it’s not, but she did use it to say she cannot eat peanuts just like I can’t eat certain foods. When I was little she didn’t give more explaination then I could handle unless I asked for it, which I rarely did. If you go to in their store section they have a book called “You and PKU” (or something like that) and it is a great book for little kids. Although obviously this would be something for Tanner to have when she is a bit older.
The truth is, eventually Tanner will go to daycare, school, work or whatever and there will be people eating differently from her. So where the first time she realizes she eats differently is when she is two and she is going out to eat with you or when she is five and starting kindergarten, it will happen. So I wouldn’t worry so much about eating things she cannot have infront of her so much. Especially because there are many companies like cambrooke, dietary specialties, maddy’s and much more that sell low protein versions of foods. Including pizzas.
I hope I made some sense and helped a little bit! nBre

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional