Community Discussion Forum That’s PKU life! Beyound Frustrated….. Reply To: Beyound Frustrated…..

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I was the PKU kid- I really do not know how my dad kept me safe with babysitters.
However, now as an adult, I have had trouble finding out what kind of treatment I should have or who can read my blood test properly. I called a state health department number that is supposed to specialize in PKU, but the lady told me they only work with children. I told her I only wanted to have help interpreting my results and she was OBNOXIOUS. I ended up telling her she was a waste of my tax money and hanging up. Not one of my finest moments.
I tried to go back on a formula- which, by the way, is a term I HATE- but I was unable to stand the taste. I think if I could conform to a modified diet it might help. Or find an alternative treatment. PKU is annoying.

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