Community Discussion Forum Adults and PKU Adult Late Diagnosed As A Child Reply To: Adult Late Diagnosed As A Child

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Hi I was diagnosed at 2 and 4 months with PKU my mother did not agree to send me to an institution even though I eventually had convulsions, head back plus all of the other off diet PKU symptoms. My mother always knew that something wasn’t right during my first year of life before the convulsions etc and took me to a hospital in Sydney. She pleaded this doctor to run tests on me which I had over and over in my first two years of life but they all proved negative. My mother then asked if there is any news about any illness or any disorders and the doctor’s reply was they had a medical journal from Dr Koch which described the wet diapper test for PKU. Then he added that “if this proves possitive then you need to put her in an institution” which my mother got really annoyed with the attitude that she was getting. I was then put into hospital to see what effect food had on me. My mother was extremely strict with me which I thank her now as I am able to live a great life!! The amazing part when I was head banging I always put my hands down to protect my head. I am really intelligent especially being over two years without treatment. I am the eldest of four children. My mother was also responsible for introducing screening for PKU into Australia! I am extremely proud of my mother she is truly amazing!

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