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PubliKforUm » New to PKU.com

Hello All

Topics: 21   Posts: 1087
I really have to agree with Sarah. I know some people with PKU who live around who get really offended if someone says things like "Things could be worse." I just think it's really unfortenate that those people have to think of PKU on the negative side. And no I'm not saying that we all should be jumping up and down and saying yay to PKU but I am saying that things could be so much worse. In my opinion I think we're, in away, lucky because we can live happily and healthy if we stick to the diet. There are other things out there that can you can't just simply stay on a diet and you'll be fine. Personally PKU doesn't really bother me much, I'm an A (some B's) Student, I have absolutely no trouble with socializing with others at school and I'm able to function in everyday things like dance classes. So for those of you parents who are worried and scared things will be just fine, you child is like all others, they just will eat alittle different. I can't even imagine how scary it must have been for you all to hear that news but I know my mother told me it broke her heart, but in the past 15 years I think she's realized that me and my sister (She is 8 and the other in my family of 7 kids with PKU) will be just fine. So basically what I'm saying is this: Keep faith and support your child with their diet and they will grow up like everyother 'normal' child (not sure what exactly we can call 'normal' since every person is different). I just think about PKU as my 'special trait' Breanna

Topics: 21   Posts: 1087
I really have to agree with Sarah. I know some people with PKU who live around who get really offended if someone says things like "Things could be worse." I just think it's really unfortenate that those people have to think of PKU on the negative side. And no I'm not saying that we all should be jumping up and down and saying yay to PKU but I am saying that things could be so much worse. In my opinion I think we're, in away, lucky because we can live happily and healthy if we stick to the diet. There are other things out there that can you can't just simply stay on a diet and you'll be fine. Personally PKU doesn't really bother me much, I'm an A (some B's) Student, I have absolutely no trouble with socializing with others at school and I'm able to function in everyday things like dance classes. So for those of you parents who are worried and scared things will be just fine, you child is like all others, they just will eat alittle different. I can't even imagine how scary it must have been for you all to hear that news but I know my mother told me it broke her heart, but in the past 15 years I think she's realized that me and my sister (She is 8 and the other in my family of 7 kids with PKU) will be just fine. So basically what I'm saying is this: Keep faith and support your child with their diet and they will grow up like everyother 'normal' child (not sure what exactly we can call 'normal' since every person is different). I just think about PKU as my 'special trait' Breanna

Topics: 12   Posts: 52
i didnt know circus peanuts were phe free. is that the candy stuff ?

Topics: 21   Posts: 1087
Yes, those are the candy circus peanuts. I didn't know they were free either but after someone here said that I look them up and they are! I was so happy because I love circus peanuts. Breanna

Topics: 12   Posts: 52
yeaa so do i and i am sure my son will when he gets older

Topics: 21   Posts: 1087
Yeah my dad always insisted that circus peanuts were high in phe, and I believed him. I should of realized my dad is a dork and usually has no idea what he's talking about :P jk Breanna

Topics: 0   Posts: 1
Hi all. I have a few questions. My mom and her older brother my uncle both have pku. I just want to know what are my changes of my children having it. I have 2 my daughter doesnt have but they took a test on my son it came out that he did have but then they took it again and he didnt. I am 5 1/2 preg now and would like to know if this is a greater change this child will have it. And I know I am a carrier of it will my daughter be one as well? And is there any information that is updated that I need to know about.

Topics: 21   Posts: 1087
Correct me if I'm wrong, but I believe if your a carrier there is a 50% chance your children will be carriers (in another words for every 2 kids you have 1 will be carrier). Also If your a carrier and but your husband is not a carrier you won't have any PKU children, you both have to be carriers for that. But if he is then there is a 25% chance (1 out of every 4 of your children will have PKU). I hope this has helped. I was just curious how old your son is who was tested and came back positive but then came back negative also was he determined to have PKU or no? I was just asking because my mom said on my first test I came back positive for PKU but on the second I was negative so they tried it two more times and both of the last two came back saying I did have PKU so they had to do a few more tests to be sure. Breanna

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