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April 5, 2010 in Uncategorized

Hi there! I just subscribed here. I'm a mother of 4 children. 2 girls are already adults and my 2 boys are 11 and 8 years old and we are living in Germany. The 8 year old is Justin, my boy with Pku. I'd like to know about living in the USA with Pku kids and what kind of Nutrition you can get. How you handle meals in school or on vacation. How often do you have to see the doctor and how often do you check the blood? Sorry, my english isn't very good so I hope you understand want I write and everybody knows what I'm looking for.I also would like to meet people living in New York State with kids with Pku. I hope to get some responses. alt

3 Reviews of New here

  1. Registered: Mar 27, 2010

    Posts: 0

    spruce grove, Alberta

    I’m actually not from the USA – i’m canadian- but am curious about what the german experience is (and what part of germany you are from) as we are hoping to vacation there (and have considered moving there but now with a newly diagnosed pku child i’m concerned about what types of funding/support is there). thanks in advance.

  2. Registered: Jun 27, 2009

    Posts: 0

    , New York

    We live in NYS. We go for bloodwork every month, unless Molly is sick and then we go more frequently. We see the doctor and nutritionist every two to three months unless we have questions. Molly is 9. We make most of our own low protein foods (recipes on but purchase foods as well from companies like Cambrooke and Taste Connections. At this point, Molly takes lunch to school. We do lots of prep before a vacation and always stay in a place that has a kitchen.


  3. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    Hi! My name is Kristi and I live in Arizona. I have PKU myself, and have seen many new foods become available to us here in the USA as I have grown up. We have several companies to choose from that provide low protein pasta, “low protien flour” (wheat starch and baking mix), mixes for muffins, cakes, frozen cookie dough, etc. Low protein cheese is available to us, as well as pre-made/frozen items that imitate the appearance of meat such as burgers, hot dogs, chicken nuggets, etc. It is amazing what is available, and I hope people not in the USA have those options as well!

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