So um yeah…I’m 15 and was wondering if anyone wanted to talk to me. I send e-mails back and forth to others with PKU and I’ve went to like christmas parties and stuff when I was younger but never really meet anyone who I got close to with PKU. nBreanna
Hey how ya doin? I’ve never really been to any of those trips, any fun? They’re still asking me to go on those trips and bowling and so. Where are you from?
I’m from Wisconsin, USA! But anyway, yeah they are loads of fun when your little, alot of low phe foods and other kids to play with. They would still be fun for me if I kept going but when I was like 7 we stopped and then when I was like 14 we went to a christmas party again but it was really ackward cuz I was the only teen who didn’t go to these things every year so I didn’t know anyone….my dietian tried to introduce me to the others but I just didn’t know what to say…
Hi…I’m from Georgia!
Kool, I’ve been in Georgia once…but only for a few days when we were heading to florida.
ya! it’s really cool here…..so……do you live in florida???
No we live in WI we were just down there for vacation! But right now I wish I did live in florida since it’s starting to get cold out. Ugh!
its so hard to stay on diet when there are so many other things you can try out there in the world that i just get a little carried away sometimes and eat what im not supposed to be eating. what i need is a friend that actually has pku and knows what im going through because then i could tell them exactly how im feeling because my diet is so hard that i hide my feelings from my mom. on friday i cheated with tacos and it wasnt even the taco my mom was mad about it was the meat and the cheese in the taco that she was mad about.so what i need is a friend that lives close and also has pku so that my mom wont worry so much when i go to a friends house. and the day that that happens i will be happy
Just curious angel where do you live? Like are you from US? And yeah it can be hard…I guess I’m lucky and have it a bit easier off since I have a 7 year old sister with PKU as well…but even though I have her it’s still hard because she’s only in 2nd grade and I can’t exactly tell her that life with pku sucks as you get older because frankly she has a good outlook on PKU and it’ll be good if she stays that way (Unlike me). But it’ll probably be even easier for her then me because she’s always going to have a bigger sister with pku…lets face it everything she’s going to experience chances are I’ve already went thru that. nBreanna
i live in wi. i also have a younger sister but she doesnt have pku.
Yeah it’s just me and my little sister who have PKU, but my mom did think my brother (he’s 16 now) had PKU because he didn’t learn to crawl and walk and all that till later on, plus he had really light hair. So they had him tested, turns out he was just a carrier.
hey BreaMarie…my name is shawna laufenberg. i saw that you said that you are from wisconsin…so am i! the southwestern corner to be exact. i go to a clinic in madison for my check-ups and stuff. im 19 and living the good pku life…if u ever wanna talk u can email me …i love to talk on the phone and i love to talk and hang out with other people with pku. seriously you should get back to me! hope to hear from you soon!
Cool I’ll give you an e-mail in alittle bit (I’ve gotta head off to dance classes soon). Are you very far from Milwaukee? Have you ever gone to the PKU cookie enchanges at childrens hospital? I used to go alot because my mom kinda sort ran it but then she got way to busy and went back to work and stuff when I was 7 so we didn’t go as much. nBreanna
Hey im new my name is bj and im a 18 years old and have pku too and find its very hard for me to control and sometimes is stressful and worries me! My levels have gotten to 35 and now are back down in the 20’s so far this is my first time really on any kind of a site about pku. i know that it is hard and i try to eat things that i can have but the hard thing is that i eat a lot of regular foods that i don’t eat alot of ditary foods . some of the new foods that i have tried stink or don’t taste good .anyone have any ideas? i am a senior in high schooland will graduate in 2007. where are you from? I am from taylor Michigan . I was 2 weeks old when they found out that i had pku no one else in my family that i am close to have pku.My brother is 19 and gratuated 2 years ago . i want to get my levels down but it is hard . The bigest thing is drinking the formula it gives me gas does anyone get that as well . please wright back.
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