Joined: 13 Dec 2006
Location: Cleveland, OH
|Posted: Dec Thu 14, 2006 9:01 pm Post subject: PKU
I am wondering if anyone has any info on PKU. I have a friend who has a child with PKU and has been told she can have only certain amounts of Fennaline (?). If too much she could become retarded is what has been told to her. Anyone out there with any info would be greatly appreciated. Thanks. -Becky
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This website is by a person (adult) with PKU and gives quite a bit of info - I've quoted some of it below: http://www.ess.sunysb.edu/tracy/whatis.html http://www.ess.sunysb.edu/tracy/pku.html
"So, what is PKU? What happens to people that have it? "
"People with PKU have a deficiency of an enzyme which is necessary for the proper metabolism of an amino acid called Phenylalanine (i.e., the component in diet soda included in the warning). Phenylalanine is an essential amino acid and it is found in nearly all foods which contain protein: meat (of all kinds), dairy products, beans, tofu... eggs, nuts, legumes... etc. the list goes on and on. Additionally, phenylalanine is found in aspartame, the sweetener found in most diet soft drinks and sugar-free candies/gum, hence the need for the warning on the labels of these products. Those of us that have PKU must follow a strict "low protein" diet to avoid all food sources that have high phenylalanine content. To get adequate amounts of other amino acids found in protein (without the damaging phenylalanine), people with PKU also have to take a special formula which is usually in the form of a liquid beverage."
Also, Here's a warning from the Tylenol website: "phenylalanine content on some packages of Children's TylenolŪ acetaminophen chewable tablets - only grape flavor or fruit burst flavor - list the incorrect amount of phenylalanine per tablet as 3mg. However, the grape flavor contains 5mg per tablet and the fruit burst flavor contains 6mg per tablet." -Nancy Coulter
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My grandson is currently being tested for PKU. I have been reading all I can get my hands on and have found a very good website that breaks down the information to very basic language and even gives you links for help with the special formula and various other information.
http://www.pkunetwork.org -Barbara Turner