I can only imagine how worried you might be. Out of me and the six of my siblings only me and my little sister (Erica who is 8) have PKU. I will be 16 in June so my mother and my family have been working with PKU for along time now. I wish I could tell both of you that the questions will stop…but they won’t. To this day I still do get asked many questions about my PKU by my friends but I know that is only because they are interested. My mother does get questions about my sister every once in awhile from people like my Grandpa and my moms sister because they don’t have to deal with PKU every single day so they aren’t pros at it like me .
As for the diet, No foods would be things like: Meat, Dairy products, most Grain products (like breads and pastas) with acceptions for some cereals, beans, nuts, things high in protein, ect. What me and my sister usually eat are things like fruits, veggies, limited amounts of junk foods (things like chips and little debbie snack cakes…but they have to be measured out and everything). Then we eat alot of low protein foods. Oh and Keisha, weither or not low protein foods are paid for depends where you live. I know here in Wisconsin me and my sister get our formula paid for and then some pastas made by dietary specialties but things from like Cambrooke and Maddy’s are not paid for and they come out of the pocket.
Your daughter will be just fine Kristi and the truth is with every child, no matter if they have a genetic disorder or not, their future is always in their parents hands. To this day I’m an A student, I dance tap, jazz, ballet and pointe (or toe), I help teach 2 younger childrens dance classes, I’ll be tutoring children at my old elemantry, I plan to go to Marquette college and eventually work in Genetics with people with Genetic disorders as a medical Geneticist and I’m going to a Maternal PKU camp this summer. What I’m trying to get at is that I am just like every other teen accept I eat different, drink my formula and check my blood and that goes for my sister aswell. And I won’t lie, there have been some times when my blood levels would not be where they need to be and until recently I would not drink my formula but I am doing fine!
I’m actually really happy because since January I have been drinking all of my formula (plus sometimes more!) and kept my levels between 2-6mg/dl like they are supposed to be.
Just try to stay calm, I know easier said then done. Anyway, I should be heading out because I actually have to leave right now to go to dance classes. nBreanna n15 w/CPKU