Hey my name is Julie and I wanted a place where kids (teens) who have PKU can come and talk to each other about the good and bads of having PKU. I have needed a place like that for a long time and I hope I can meet some good friends here that are going through the same thing I am. I hope this works out. nJulie
Hi, we’ve kind of already met but I’m here if you want to talk.
Hey Breanna, nAre you in High school? What do you usually do for lunch? that is like my worst time to cheet. There are just so many good looking foods in the lunch line.
Yeah I’m in 10th grade and I know what you mean. I usually take the salad bar at lunch but they don’t have that on tuesday and thursday so then on those days I just get something else and I always eat way more then I should.
I konw. i am eating so much more than I should be. Do you play any sports or anything? I am not playing any anymore until next year so i am trying to start a girls’ work out “program” for after school to help “loose weight” (make girls feel better about how they look. Hey if you have any friends that are on here, tell them to reply so I can meet them! I can’t wait to have more friends on my profile.
Yeah me and my 4 other sisters dance, I do tap jazz ballet and pointe plus I help my older sister teach a class she teaches and then I help teach my ‘PKU-Buddies’ class. Erica’s my sister, she’s 8 and calls us that since we both have PKU. So yeah I’m busy like 4 or 5 nights a week with that, I’ve always been on the real tiny side, partcially cuz my dads side of the family are all smaller and also kind of because of the fact that I don’t eat meat and stuff, hope the whole group your starting works out.
Thanks I hope so too. I will start playing sports again in college which will also get me back into shape. My family is small too just because of our mother, but not really height wise, we just have very small hands and feet. lol and my some of my sisters have very tiny ears. I never got into dance but I have always wanted to learn tap. Maybe someday I will be able to take a beginners class with 6 yr olds lol.
Yeah I got the short height from my mom’s family and the low weight from my dad. Yuck, I went out to eat with my mom and I had a garden salad and forgot to ask for no bacon and stuff so I had to pick the bacon and eggs out of it and missed a piece. I got a big bite of bacon without realizing it and it so grossed me out . Lets just say now I know I’ll never try bacon again…my mom just laughed at the face I made.
That is funny about the bacon because I tried bacon once too and I also thought it was disgusting. I dont understand why people like it so much YUCK! also, my little sister, the one i’ve been telling you about, she is Emlou93.
Yeah me and my mom have talked before and we decided we don’t think I would beable to ever go off diet and eat meat. Turkey grosses me out because the stuffing looks weird, I already decided bacon is icky and eggs smell. So I guess I have a reason never to go off diet.
The first time I met with my dietition after I turned 18, he met with me and it was a serious meeting. It is kind of cool though because we get to go into a different room now and they can only tell my mom what I say they can tell her. So since I had really high levels, he asked me if I wanted to just quit the diet because it was my choice. I have wanted that choice my whole life but when it was offered to me I had to turn it down. It was wierd. not because I dont like most of the other foods, i do, I love ham and cheese, it was just wierd. I couldn’t go off the diet. and now I am happy i chose that because my levels are back down, we got new really good food at wal mart that we can have and now i dont have to worry as much about when I want to get pregnant. But I love being able to tell my doctor what TRULY goes on at school and social events and having her trust (by law) to not tell my mother.
Yeah well I can’t wait until I’m 18 and then my dietian and doctors have to keep things just between the two of us. I don’t know it’s just that when my mom (my dad I don’t mind as much) is in the room I like don’t want to say somethings because I’m not sure what she’ll think. So I defintally can’t wait till I’m 18.
You know what drives me nuts, when we do go to the dietian my parents make it seem like my little sister is perfect with her diet and I’m horrible. It stinks because truth is I’m not that bad with my diet, I write down what I eat and all but my parents think I eat whatever I want because there thinking is if they don’t see me write my food down then I didn’t and the same with my milk.
Going to the dietition was like going to hell. There would always be tears and always be yelling…..at me. sometimes they wouldn’t even check emily because there was no need, she keeps doing the same perfect stuff so what’s to check? While I get lectured EVERY TIME i go there and I know JUST what I am going to get. I don’t like letting everybody down but guess what, I HATE doctors telling me what to do and saying “it’s not as hard as you are making it out to be” when guess what?…. they have no idea because THEY DONT HAVE TO DEAL WITH IT EVERY DAY OF THIER LIFE!!!!! errrr it errks me to no end!!!!! where do they have the right to tell me how to feel and what to think when they don’t even know what it is like to have to deal with pku on a daily basis? It is just a whole differnent world that they have no idea about. at least that is how I feel
Yeah I know exactly what you mean! I don’t really have to deal with that as much since I got a new doctor and dietian like within the past year and they are pretty laid back. But from when I was like 4 up until I was maybe 13 I had this dumb doctor who always lectured me for hours on end (LITERTALLY!) And then he’d act all nice like I actually liked him and then like he totally blew everything out of proportion, one I remember I was like maybe 10 and my level was like 14mg/dl and then the next one came back as like 7mg/dl and instead of congratdulating me for bringing my levels down he yelled at me for not having it between2-6mg/dl! It made me sooooooooooooo mad!
I got my levels back yesterday. It came back at 17. I tried to tell my mom that I hadn’t been drinking it for a week before I drew that blood. I think she understood but still wasn’t happy about it. Then Ann, (my dietition) called me to talk about it. She said it was a big improovment because last time they couldn’t even read it because it was so high ( i feel no different now then when it was high) But I was told that I am suppose to take 4 coolers a day instead of 2. I am suppose to send in a blood sample before Cancun. I kind of like the challenge, only because I like the coolers. I am starting to get a craving for them which to me is HUGE! I never understood how my sister would crave her milk in the middle of the night. But not I kinda get it.