Community Discussion Forum New to New to Pku Reply To: New to Pku

Avatar of Dustin

Thank you both so much for your info. I called the doctor office and they are saying that he will be fine to wait until then and that I shouldn’t worry. I live in Salt Lake City, UT and it is a clinic at the university of utah that I am bringing him to. I have been doing a lot of research on it and am learning a great deal. It has been stressfull getting ahold of people to get answers. They wouldn’t give me his PHE level over the phone and said that it had something to do with his PKU screening results not really that he has PKU. They told me he was PKU positive but that was because something in one of the screening test came back elevated. So really I am now trying to find out what test was not proper and I should hear from the dr tomorrow. I was referred to the clinic cause my pediatrician has never treated PKU and doesn’t know much about it. He was talking that it was more of a Carnitine defficiency and that was what we are going to treat it with. The clinic is saying that it is someting else. So I am just playing with games of trying to get answers of what we are going to treat.

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