Hey Amanda, this is random but when is your Birthday? Just curious cause I have a June B-day too .
Also, Welcome to the group Allen!
Hannah, growing up with PKU for me was pretty easy. It never bothered me to have different food then my siblings. If they got something as long as I had starbursts, low pro cookies or something else like that then I was fine. I was home schooled until 4th grade though, so until I was 9 the only people I had to deal with that ate differently was family.
When I started school, that’s when things got complicating. In 4th grade I took a cold lunch to school, I didn’t like it because the majority of children took hot lunch and so did my siblings (I have 5 sisters and a brother by the way, one with PKU and one on the way…a total of soon-to-be 7 siblings). So my mom fought with my school to provide lunchs for me. They only agreed after my mom threatened to bring in a lawyer, because by law they are required to provide lunch for us. The silly thing was all my mom asked was that they provide me with extra protions of fruits and veggies and anything else I could eat. My mom sent the main part of my meal like pasta or sandwiches.
Then in 6th grade I once again got sick of how my lunch was going, so my mom fought with the school again. This time she made them provide me full out low protein meals. My mom would get the lunch menu a month in advance and she would change it so it was PKU friendly but as close to what the other students would have as she could. Then the school would purchase the food and make it for me. I did this until high school and now I either take a cold lunch or get a salad with chips at school.
One problem I had when I was little was drinking my formula. I’ve taken Phenylade (orange, strawberry, vanilla and chocolate), Phlexy-10 bars and drink mix, Phenex Chews (which sadly got discontinued), Periflex and many more. The point is I was to picky to ever like my formula and I always liked variety so I switched formulas almost every 6 months. I now have been drinking the Vitaflo PKU express coolers (orange and purple) and XPhe Maxmamum juice boxes (berry and orange) AND I drink Phenylade Chocolate aswell. I didn’t want to drink Phenylade. My dietitian didn’t want me to jump into eating more phe right away incase something went wrong and I had to go back to my original amount of 300 mg of phe. So she had me add milk to my formula to get the extra phe, the coolers and juice boxes come premade in pouches and juice boxes so it is easier to mix the milk into Phenylade.
Anyway, I know I kind of started rambling, so I hope I sort of answered your question. I guess what life was like growing up with PKU is just a very general question. But if you have any more specific questions that I didn’t cover feel free to ask!!!
And sorry this is so long! nBreanna 16 CPKU