HELLO MY NAME IS ANGIEBABY I HAVE PKU I,M 31 I HOPE TO MEET AND TALK TO PEOPLE LIKE ME . I HOPE TO MAKE FRIENDS HERE . WHEN U GOT PKU IT HAD TO MAKE FRIENDS CAUSE THEY JUDGE U .I HOPE TOGET EMAILS ANDGET TO KNOW PEOPLE LIKE ME AND THAT I,M NOT ALONE COM [/SIZE][/COLOR]
Hi my name’s Breanna I’m 15 (So younger then you) but if you ever want to chat I’m here. Me and my 8 year old sister have CPKU (I have 4 other sisters and a brother who don’t have PKU).
Hi Im 23 and have Classical PKU, I work in a Food Factory on Night shift, I see many different products going down the production line, Most people think im tempted to try the products but as there are many ingredients which are not allowed on pku, such as nuts, I will not try them and find this easy. If you had to work with the smell of chocolate it woud put you off chocolate!
Lol, I defintally wouldn’t turn chocolate down if given the chance. Usually I’m good with the diet but that is like my weakness (but luckily I don’t go to over board and know when to stop).
hello this is angie it is good to hear from people who have pku. i,m going to starte the vitaflow pku epress coolers. and i,m on the hene chews also. how is the vita flow pku express. is it good and what will be looking for what is it . please reply
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
see iwas born in the 70,s they didn,t know much about pku like they know about it today . the state took me away from my parents when i was baby. so i was in the state for a while .so like i said back then they didn,t know much i was going to st. judes here in tennessee. i,m just now getting where i could get control
Yeah, I know about things like that and how they used to take children off the diet at young ages and such and I think it was horrible but I guess at the time people thought that was the right thing to do. But I think that’s great that your getting your diet back to where it should be! I’d love to hear anything about what it’s like with PKU as an adult, considering I’ll be one someday. Anyway I’ve gotta go (I’m teaching dance classes tonight). Keep in touch I love hearing from other. nBreanna
when ever ur young u think ur like everyone else. the first time i notice somehing diffrent about me in the lunch room i would look around and wonder why i was not eating wha they was eating and drinking what they are drinking like milk. but i have adatage during lunck i got to drink cola,s in the lunch room when noone else could. in grade school i had peole who took care of me the lunch ladies where my angels they watch out for me in school .my head angel was paralee . we are still close and we talk all the time . plu her and her son where my pku hero,s . david is her son we was close .pluse we dated for 3 years he was my first boy friend plus he was my angel along with is mother. on january 1,2006 he died in a car wreck. o that was so hard on me.he is still my angel and he is still watching over me. we was each others frist girl friend and boy friend. david was his name . it was so hard. he never judged me he never let anyone else laugh or talk about me . r.i.p david love ya ang
I’m really sorry to hear about David, I have a cousin like that and I thank god everyday for her. We used to not really get alone until I turned about 7 (shes’ about a year and 2 months other then me) but now we’re unsepartable.
and when you talk about thinking your like everyone else I know what you mean. When I was little until I was maybe 4 I always insisted that my sibilings and parents had PK-you and I had PK-me and my mom couldn’t get me to understand I had PKU and they didn’t. Eventaully I began to understand.