Community Discussion Forum Generation PKU How do you deal with PKU in the US (especially NYC)?

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    Avatar of Anabel

    Hi everyone,

    I'm new to this forum so I first want to introduce myself: My name is Ani, I'm 19 years old and I'm  a German au pair in NYC. I have PKU and I feel perfectly well with it. I have no problems dealing with it because my parents were good at showing me alternatives to meat or milk and all that kind of food.
    I wanted to ask if you can tell me more about how you deal with PKU over here because I have to find new ways to get my special food here. I'm going to stay for 12 months and the first three months I brought some food with me from Germany and had relatives who visited me and brought some special food for me, too. But now I have to find out how expensive it is to order some food in the US or if you don't have to pay for it if you have an insurance. Actually I know that my insurance won't pay for these costs and I only found some websites on which the food is quite expensive so that it would be rather better for me to order all my stuff from Germany. Though, I thought I might ask if there are some cheaper alternatives or even stores in NYC where I can buy it?
    I appreciate any help and would love to get to know some people with PKU in my area :)
    Take care :)

    Avatar of Cook4Love

    What is your phe tolerance?  We do order some basics from the low protein food companies (Aproten Pasta, wheat starch, some cheese slices), but get a lot of our foods from various health food stores.  Trader Joe's  and Whole Foods have some low protein food options.  Trader Joe's has Morning Star Breakfast Strips, Marsala Veggie Burgers, gluten free waffles, a few frozen veggie mixes, pop chips, rice milk, brown rice cereal bars, French Twists and Joe Joe's sandwich cookies.  Whole foods carries some Gluten free products you might be able to have, Follow Your Heart Cheese, Coconut Yogurt and Rice Milk. 

    Not sure where you are in NYC, but if you can make your way north – Westchester Medical Center in Valhalla (about 45 minutes north of the city) is having their Low Protein Sweet Swap this Wednesday starting at 3:30.  There will be a few vendors there that will have samples to give out and lots of food from families.  Drop me a line if you think you can make it and I will provide you with more information.

    Take care,
    Brenda mom to Molly 9 CPKU & Jack 7 non

    Avatar of Anabel

     Hi Molly, thanks for your response. My phe tolerance is about 800 – 1000 mg phe a day. I don't know how you are sizing it, though. I would say it's a normal amount that's okay to live with. Actually the most important things for me are the basics such as pasta, bread and flour. I also know the low protein company Aproten :) Thanks for the info about Trader Joe's and Whole Foods, I might check that out.

    Unfortunately I'm living in Queens, too far away from Westchester and actually it's a bad time for me to go there tomorrow but I would be interested in it if they will do it again. So THANK you for all the informations :)

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