A Day in the Life with PKU: Ordering and Purchasing Low Protein Foods

In my previous post, I discussed all the preparations we make, that I could think of, for Carson's low protein food.  This food is so important to his diet because he is so limited in what regular foods he can safely consume, and the low protein food supplements the calories and things he needs, or in other words, it fills up his tummy so he does not get so hungry.  It also gives us the opportunity to cook foods that are similar to the kinds of foods we eat, like pastas and pizzas and desserts, so he hopefully does not feel too alienated eating around others.

In order to have these special foods to prepare, we have to begin, of course, by obtaining them.  In the State of Alabama, there is no government assistance for the purchase of low protein foods.  There are some states that do provide this, even some insurance companies, but not where we live.  There is a bill that has been introduced and is reintroduced nearly every year known as the Medical Foods Equity Act, which is attempting to change this.  I provided a link to it in a past blog post, maybe last year's PKU Awareness Month, but you can Google it just as well.  :)  I am not sure how I feel about this issue, since we are living it I know how expensive the food is, but I am also not very fond of expanding government assistance.  For now, we survive.  Jehovah Jireh, God is my Provider!  People who need help can try for grants or samples or other assistance that is currently available. 

I began my journey of ordering low protein foods for Carson by visiting www.pkunews.org.  There is a box there labeled Diet-Related Information, and if you click on it you will find a link, near the bottom of the page I think, for a list of low protein food companies.  It includes website links and phone numbers of each company.  I do all of my shopping and most ordering online and it is shipped right to our door, which makes it so easy!  I love technology!  Some companies charge shipping, some actually do not.  Some companies offer coupons and specials from time to time, so it pays to check your email regularly for deals, and like them on facebook, if they have a facebook page.  Also, some of them may sell sample packs so you can try their products before spending a bundle of money, which is really important to me!

Just to give you a sample of what we order, I will share with you the invoices from the last orders I placed for some of Carson's main staples.

From Cambrooke:

SKU        Qty        Unit Price        Ext Price
Shake 'N' Cheese Shake 'N' Cheese


MixQuick MixQuick

GO! Pockets - Cheesy Broccoli GO! Pockets - Cheesy Broccoli

Pierogi Pierogi

Toasted Pierogi Toasted Pierogi


Sales Tax

Shipping & Handling (with coupon

Order Total
From PKU Perspectives:

Product ID Product Name Price Quantity Total
KMAA0322 Country Sunrise EGG/OMELET (UNIVERSAL Egg) Mix/ 1- #10 Can (3.75 lbs) $45.00
(Not Taxable)
1 $45.00
Subtotal Amount : $45.00
Discount : $0.00
Promo Code Discount : - $2.25
Shipping (Shipping is free) : $0.00
Tax Amount : $0.00
Current Total : $42.75

From Nutricia North America:

I ordered 4 boxes of Loprofin Macaroni elbows ($11 each) for a total of $44 (no tax and no shipping for orders over $30).  Each box is 250g (about the size of a box of Pasta Roni).

I also ordered from Applied Nutrition (they are now merged with Nutricia) a case of Maddy's Fudge Brownie Mix (4 cans) for a subtotal of $29.50.  The killer here is that I can't just order one can, so I can't get it to a $30 minimum, therefore I had to pay $15 shipping!  That irks me!  The grand total on that one was $44.50.

This entire order totaled around $275.  Some of those items I might only order once a year, some I order every 3 months.  I am usually ordering something at least every 3 months.  Things that I did not have to order at this time were wheat starch and other baking mix for his bread, pizza pockets, and other types of pasta we use.  I think last year I estimated we spent somewhere over $800 for Carson's low protein food items.  We do count this as a deduction on taxes, which is helpful.

One last great way to save money is through a great resource, the National PKU Alliance.  If you donate to this organization, maybe no more than $30 for a year, you get all kinds of freebies and/or discounts from most of these low protein food companies.  This year I got an awesome variety of goodies!  It is the second year I have donated.  It more than pays for itself.   The biggest savings is Cambrooke, who gives $100 gift certificate the first time you donate, then $50 each year you renew.  I saved a lot of money by doing that again this year!  Look at all the great stuff we received from Nutricia (about $100 worth as well!)!