Community Discussion Forum That’s PKU life! How do they get away with it?

Viewing 6 posts - 1 through 6 (of 6 total)
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    Avatar of Anna

    The more foods I introduce to my foster daughter, the more she wants to eat! We quickly realized that although I could get by without purchasing the low potein foods, that she just wasn’t getting full on the regular items.
    So I broke down, left my comfort zone and entered my first health food store. It wasn’t very accomodating. The clerk actually told me “Low protein? Almost all of our clients are gastric and need high protein – you’re just going to have to go read the labels…” So that’s exactly what I did. Unfortunately, at my first store I only found one package of free vanilla cream sandwich cookies and a bag of low protein gluten free pretzels. Still, I considered myself lucky to have found even that.
    After talking with another pku parent from my area, he pointed me towards a better health store that would understand my needs better. So I was able to purchase low protein immitation rice, cheese flavored cheese sauce (powder form), and low protein mac n cheese… The cost? $28.00!!! For three items!
    How in the world do they get buy with charging so much for these food products? It’s not right. These are the only foods my foster daughter can eat in larger quantities and it’s wrong that they cost so much money.
    Sorry…just wanted to vent.

    Avatar of

    poppy corn , i so agree with u, atleast u can find the foods in a health store , i have to specail order mine from the mainland and it takes a week to get it and i spend 100 dollars extra a month for food , not on top of my regular grocieries. . it is finacly breaking espeically if ur a student, comem from a big family or are a young couple stuggling to stay on top of it all. like me and my boyfriend i had a bad knee injury and couldnt work for a year and had no income coming in, he had to pay all the bills, rent, grociers and low protein foods and other exspenxes and on top of it he was startign his own business. nunfortualy since there is not alot know about pku theres not alot of coverage but it does vary all over the world, forinstance my formula is coverd and not my food here in BC , in Qubec( wich is in canada, ) has everythign covered.
    this is why i decided to organize a walk a thon for pku and donate the money to a “food fund” so ppl who cant affod the foods can still get them. its also why i have my website and why im trying to write a letter along with my clinic to our MPS and lobby for coverage. ni would recomend anyoen doing that. infact if u go to the pku message portal there is a whole discussion on it and what others are trying to do ! nanyways just wanted to tell u that i understand and ur not alone in feeling like this! wish i could be more help!

    Avatar of Breanna

    Yep, low protein foods are expensive. Fortentually I get some foods (pasta, baking mix and a few other things) free here in Wisconsin. Have you tried going to, or These are a few low protein companies that you could order from. I believe with all of them you should beable to order online, but I should warn you that they are expensive aswell. But I guess it doesn’t hurt to look right? nSometimes in the past when I got hungry formula helped. nBre 16 CPKU

    Avatar of Carol

    Hi! We are also foster parents (about to adopt). OCS gives us an additional stipend for the low protein food we order. Have you check that?

    Avatar of Anna

    Congrats on you upcoming adoption! I get a little larger reimbursement rate, but it goes for gas back and forth to the metabolism clinic and diaper rash meds. As of right now, the county is not willing to help with the cost of the pku special foods. The fact that my foster daughter CAN eat some regular foods – even if just in small quantities – causes them to not see it as a necessity.

    Avatar of Sarah

    It is a dilema we all face. I am in Washington and here our formula is covered but our food is not. I am working with the legislature to get it covered but they are not convinced yet. My next step is to go to a meeting and take the low protein foods and the same regular foods and show them the price of the toasted cheese sandwich out of regular foods and then have them guess the price of the low protein foods. They will be wrong but at least they can see when showing them apples for apples what things cost. One reason it costs so much for Low pro things is it takes longer and the process is much more involved than regular foods.

Viewing 6 posts - 1 through 6 (of 6 total)
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