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.
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.
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