PKU.com Community Discussion Forum Generation PKU PKU diet Reply To: PKU diet

#5740
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BreaMarie91
Member

Shirl,
I have a question, was your sister on a low protein/PKU diet before she began having seizures? Even if she was diagnosed late she should still have went onto the diet when she found out if she is not already. Do you do blood tests with her? Because I know that most of what you’re explaining are symptoms of high phe levels. When my levels are to high I do get tired, lack concentration, get headaches and muscle pains. There are also alot of other symptoms aswell and seizures would be one of the more serious ones. nBreanna 15 (soon to be 16!) w/CPKU

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