Community Discussion Forum That’s PKU life! Regarding clinics Reply To: Regarding clinics

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Kami_s mom

Being the mom of a newborn with PKU I was immediately very greatful to live so close to a Children’s Clinic that treated PKU. I am about fifteen minutes from it and go for weekly visits. The staff is very kind and supportive. Once I started reading about how others don’t have a clinic available I realized how lucky we are. I can’t imagine having to figure this stuff out on my own or only having help through the telephone. I intend for my daughter to stay on the diet for life and to make that possible I must be really up on following the diet in preparing food for her throughout childhood. I am going to get the big PKU food list notebook soon so I can start learning how to count phe before I actually have to do it on a daily basis. Our nutritionist is very helpful. I don’t know how I would know about all this without her.

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