Community Discussion Forum Generation PKU Hey I’m new Reply To: Hey I’m new

Avatar of Breanna

Hi Bj, my name’s Breanna. I’m 15 (I big bad sophmore jk). Me and my younger sister (Erica is 8) have CPKU aswell. I live over in Wisconsin, but I do have a great grandma, plus a few second cousins who live in Michigan so I go there almost every other year. Do you live near Battlecreek? Because that is where my great grandma lives. Anyway really the only problem I ever had with formula was I always thought they all tasted gross, but I tried this new formula, PKUcoolers and they are pretty good. Plus they come in little juice pouchs already made. Have you tried seeing if maybe you could switch formulas? I had to do a whole lot of switch, I think I’ve drank atleast 8 or 9 different milks, plus phelexy 10 bars before I decided to settle on the coolers and phenex chews.
My past few levels have have been around 8.6 or so, so they aren’t perfect but better then when I was getting like 16. Can I ask why you have trouble doing your levels? We usually do me and my sisters levels at home (we do the finger stick) then we mail them in, the only trouble that we have is that needles scare the heck out of me (I know I’m a baby ).
What all have you tried? Have you tried anything from cambrooke because they have like cookies, hot dogs mix, egg mix, and a bunch of stuff like that. The only problem is things from cambrooke are real expensive. The only low pro foods I eat all the time are noodles, bread and the cambrooke cookies. Then for the most part everything else is like veggies and fruit and then junk food like little debbie or fruit snacks and junk. Well I’ve gotta go because I just realize I have to be somewhere in like 5 minutes Silly me! nBreanna

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