Dear formula companies: stop teasing me!


First of all, by no means am I trying to knock the companies that develop low protein foods and formulas. The advancements in treatment options for PKU that have been made just in the past few years have been wonderful, and I am SOOOOO grateful for the companies that are dedicated to helping our small community! So many newer formulas such as the amino acid blend mix-ins made by Applied Nutrition, Camino Pro Restore, and now Camino Pro Complete bars have come out in such a short time. These newer developments are really giving PKU patients the freedom to personalize their treatment to meet their needs. Best of all most of these newer formulas (in my opinion) are delicious!!!

However, it’s a little bit disheartening when you hear about these new products and even get to try them only to learn that you will not be able to utilize them for one reason or another. For example, I think the Camino Pro Restore is absolutely amazing! The taste is great. The fact that it is pre-made is incredibly convenient, and the packaging does not scream “medical supplement” like some other formulas do. In fact if I was given the choice I would use Restore on a daily basis in a heartbeat. The problem is, there is no way I could afford this formula. I am fortunate that I live in a state where some formulas are covered, but Restore is not one of them. I couldn’t even imagine the battle I would go through if I tried to get my insurance to cover it, and even if I did get coverage the copay would be through the roof.

The Complete bars are pretty much the same story. My sister and I had the opportunity to taste test them last fall, and we both loved them. These would be great for my sister to take to school and for me to snack on while I am running from school to work to dance practice to babysitting and so on. Again though, I am sure the price will be costly.

Don’t get me wrong I know that by living in a state the provides some formulas I am already much better off than some PKU patients and their family. I also know that many people struggle with drinking formulas that they hate, so I am glad that I like the formula I am currently on (Phenylade Essentials–chocolate). I just wish I wasn’t teased with nutritional supplements that I like even more. Here’s hoping I become rich someday and can stock up one whichever formulas I please LOL! In any case kudos to the formula/low pro companies for continuing to make amazing products!!!

P.S. Sorry for not posting in such a long while. What can I say, life happened!


About Breamarie91

I am a twenty-three year old adult with PKU. I was diagnosed at nine days of age and have been treated every since. I also have two younger sisters who have PKU. In addition to studying early childhood/elementary education with a minor in creative arts, I also dance on my colleges dance team, work in a child care center and as a youth dance instructor, and function as the organization director of the PKU Organization of Wisconsin, Inc. I am also in the process of opening my own business (a dance

2 responses »

  1. Luckily over here, I live in Germany, we can choose whatever formula we think is appropriate for the diet and whatever is our taste and we get coverage. I hope there will be an approach in this direction over there as well. Every PKU should have the possibility to do diet the best he / she can and it mustn’t be a matter of money 😦

    Katie xxx

    PS: Great you’re back πŸ™‚

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