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  • #7190
    Avatar of valerie

    We dont have a specialist near us to treat my son. How often do you have to visit with a specialist?

    Avatar of Breanna

    For me and my younger sister we go once a year. We used to go twice because on and off my sisters levels and sometimes mine weren’t where they needed to be. I would be going once a year, except I’m on the new drug Kuvan so I go for appointments every 3 months now.

    Avatar of Kristi

    It seems to depnd on how old the child is and how well he/she is doing with blood levels. Ashley was going every week when she was a new baby. Now that she’s a year old and her levels have been very steady, she’s going about every 6-8 weeks, and they tell me that as she gets older, she won’t have to go as often.

    Avatar of Tracie

    Hi there,
    I actually went alot 1 a month. nThey ( Dr.)were doing alot of brain MRIs on me. nThat is also when i was younger.
    I would think it would depend on the type of PKU he or she has. nAs for myself i am borderline PKU. nSo they did alot of experiments on me,cause i have a rare Gene Mutation in me.Yippee LOL. nSo i did spend sometime in the hospital. nMy body can breakdown protein,but they do not know why?orHow? nAnd that is to this day.
    Hopefully i was helpful, nTracie-PKU

Viewing 4 posts - 1 through 4 (of 4 total)
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