Community Discussion Forum Adults and PKU Off the diet Reply To: Off the diet

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This message is in response to angelears07. I am one such person who was taken off the diet when I was 5 years of age. I have been off my diet my whole life and am doing fine. I am 49 years old and I am the seventh child out of eight. Four out of eight of us have pku. My older brother and older sister are mentally retarded. I have a younger brother and myself were on the diet at birth. We have graduated from high school and gone to college and did just fine. When my older brother was born no one knew about pku. My parents talked to doctors and did alot of research trying to find out what was wrong with my brother. I can only imagine what my parents have gone through not knowing what was wrong with him. My older brother was the second born. After him were three normal children and my sister before me was born with pku and she was not caught in time and she is mentally retarded. I was born next and my parents and doctors suspected that I would have pku and I was put on the diet and then my younger brother was born who also had pku. So we were both on the diet together. When my older brohters and sisters were eating something we could not have they would just tell us that we would not like it and being kids we believed them. So were were ok with that. I did take some special educations classes in school, but other than that I had no mental, physical, or emotional problems. My younger brother and I developed normally even after being taken off the diet at 5 & 3. I had a pregnancy and was on the diet when I was pregnant and stuck to it without any waivering. She was born with a heart condition, but was operated on at age four and she is pku free. Due to the pku factor in my genes I opted to have my tubes tied after her birth. She now 27 years old and has two children of her own who are pku free, because my daughter is a carrier. I don’t quite understand this stuff about being on the diet for life. It is all different for me, but if it helps people go for it. I personally cannot afford the diet and am doing fine without of it. Thanks for listening to my story. I hope it helps or at least give some information on some early history of pku.

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