Phenylketonuria (PKU) Support Group

what discussion?

i wanna talkj but no one seems to want to. hello people? wake up!

I would like to discuss PKU....but we all need to be able to communicate with others. I see the title being "Teens having Trouble"...well what kind of trouble. We need to hear what is on your mind. Please talk....just let it out.

Moya

Yep let it out.

Well, nobody is going first. So I guess I will. My son is not a teenager yet, but the time is coming soon and I am already frustrated at what is to come. My(his)dietician and everyone else are so quick to chew my --- for not weighing the food correctly and every little thing I seem to be doing wrong, but then turn around and tell the school they don't have to weigh his food for him. What kind of message is this sending my son and how is he gonna respond when it comes time to do it himself? I work my --- off to keep him healthy and nobody seems to take this seriously....... why???
So quick to point those fingers, but never wanna do anything to help! Is that what you meant by let it out? I do feel a little better.

I don't know if I have a lesser form of PKU or if I am just allergic or senstive to aspertame as the only symptoms I show are aspertame poising and blond hair (there are people with blond hair on both sides of my family including my Mom). Just incase I do I try to stay on the lower ends of consumption of protein for what is reccomded for my gender and age group according to the Canada Food Guide. I am here to learn more and to support others. I am also a teenager myself.

Hi,

I just have a comment about the asperteme....I know you are a teenager and when you take this you really dont have any side effects....but believe me...the longer you take it in life...the harder it will be on your body in the future if you continue. I took it when I was your age & they never had that sign on the soda cans "Phenylketonuria Contains Phenylalanine".....and now I have no feeling in my legs....and have trouble walking. It feels like I am going paralyzed....this started with me when I was in my 20's and I didnt know what it was...and then I learned it had to do with my PKU. Please, stay away from the stuff....you will just hurt yourself later down the road. Write me if you want to talk more about side effects....and take care.

Shamrock593-

The chances are you do not have PKU. If you did, you would have many more issues related to just eating foods such as meat, dairy, beans, nuts, and grains. These issues would be more neurological rather than anything else.

PKU is something that you are tested for as an infant. There are some rare cases where PKU is left undetected, but in most of those cases the infant begins to show issues by six months of age.