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

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hello pku1962 I am a 35 year old with classic pku and I live in missouri and I understand what you are talking about. I was born in 1971 was diagnose at birth with pku and i was also taken off diet when I started kindergarten as I got older my step-mother notice I was not acting right so back to hospital I went and I had high phe levels and was put back on diet in the 6th grade and was very good with diet in school but now that I am adult I don’t do such a good job because I know what I am missing.. I also have a daughter she does not have pku but has some side effects from high phes when I was pg but she is 14 and in the 9th grade at a state school for the disable she is doing great..
I know have tremors in my hands,eye’s,tongue but I do ok I don’t know what my IQ is I have not been tested for a while but my last level was 17 I tend to stay in the teens never over 20..
I hope you are doing well and good luck with everything I know how hard it is . It was nice to see that someone knows what I am going through.
nGood luck to All

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