Community Discussion Forum New to hello new here Reply To: hello new here

Avatar of Breanna

Angie- nThe PKUcoolers are awesome. I freeze them over night and by the time I have them at lunch at school they are unthawed. Most of my friends only knew what they were because I have PKU, but anyone who doesn’t know I have PKU just thinks they are juice. Also about the phenex chews I’m mad, I guess the Phenex company isn’t making them anymore ! I actually really liked those! I heard this from a PKU mom that my mom talks to and then I talked to my dietian and she confirmed what the mother said. But all is good because my dietian has been emailing me and talking to me about other things I can do or try (I’m the kind of person who doesn’t like just one thing, I like options).
I saw your post at the adults board and just wanted to give my input on that. I’m pretty sure the reason why some people with PKU can lead easier or more normal lives and hold jobs and such like you said has to do with their diet. If your diet is good and your levels are good when your younger there is a much higher chance you won’t have learning issues and such. But if your diet isn’t then it can effect your brain and cause things like poor concentration, tiredness, vomitting, tremors/shakes, ect. So I guess when your talking about grades and school if your levels are good as a child there is more of a chance that you won’t have trouble in school because to much phenylalanine can build up in our bloodstreams making it harder for blood and oxygen to flow to the brain which can result in a lower IQ (and I’m sure that we all know if our pku wasn’t caught at birth, mental retardation). Hope that answered your question. 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