Community Discussion Forum Parent support Nutrition of low pro foods

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
  • #8670
    Avatar of Grace

       So I have a 9 month old with CPKU and I am looking at cambrook foods to see what I want to order once my insurance is all set. I am having a difficult time we try to eat organic as much as possible, avoid trans fats at all costs and try to stay away from chemicals as much as possible. I am quickly realizing that this is not going to be possible for My little one.
       I am wondering what I can Give him that would be the best choices. My dieticitan told me to get the shredded cheese, but I am going to have a hard time doing this when the second ingrediant is Partially Hydrogenated oil, Does anyone else have this problem. Can I just become some super cook and make these things myself a little healthier. (Because I would find the time and I might be able to be a good cook.. lol)

    Avatar of Katie

    ahhh welcome to the wonderful unhealthy foods associated with PKU!!  I actually never realized how unhealthy these foods really can be… check the Cook for Love website – I believe they list nutrition facts.  I will look into this for you too and get back to you… about how many grams of protein can your baby handle in a given day?

    Avatar of Sarah

    Unfortunately there's not a great answer to this. The upside is that produce is low in protein &  there are so many great options for the diet as far as fruits and veggies. Apples to Zucchini is an excellent cookbook…full of low protein recipes that mainly produce based & can be adapted for higher protein diets easily. Cook for Love also has some wonderful recipes. But it's true that standard nutrition rules aren't generally the first concern when it comes to the low protein diet. It's been something I've struggled with–having to choose between eating what is typically considered healthy (ie–whole grains, balanced diet) and eating what is best for me in terms of phe. Cambrooke is a great option for ready made stuff. You probably can't avoid the  baking mixes & wheat starch etc, but if you like to cook you can probably find ways to adapt recipes to make them healthier. It's a little cheaper too, just way more time consuming. At least those foods are an option. When I was a kid, I got candy whenever I ran out of phe for the day! My mom even has saved an article posted in a local newspaper in the early 80s about PKU kids who were on a junk food diet. We've come a long way…

    Avatar of Hunter

    Hello Hello!

    Welcome to my world! I have PKU and  have studied nutrition and have struggled personally with this diet and the conflicts it brings for a long time. As Lorsar said, we as PKUer's do have different priorities. PHE is the number one concern, however once you get past this, it IS possible to integrate nutrition basics into the diet. The low protein breads and pastas are staples in my diet and I pair them with as much fresh and organic (if I have the money… I am still a student!) produce as I can. I want to be able to EAT as many minerals and vitamins as possible! There are also so many options now adays at health food stores, especially with the gluten free products that have been on the rise. For example, Nature's Path makes cereals that are all organic and a few of them are definitely doable on a PKU diet. There are also rice or vegan imitation cheese options that are a little higher than the LoPro cheese, but contain NO transfat. Depending on your sons tolerance, these may be very do-able options. I find a lot of these products at Trader Joes and Whole Foods. As for the breads, it is completely possible to make your own out of wheat starch, yeast, and water and without the other preservatives that come in the breads pre made (as with any breads) this is what my parents growing up, and as you said, if you have the time and know that they may not last as long, this will deinitely give you peace of mind. They also did this with pasta, but that is quite the endeavor! As for foods when your son's PHE tolerance is almost or completely used up, eat apples no need to completely rely on candy… there are also 'fruit leathers' at the whole foods stores that are essentially free which are good substitues for the fruit by the foot and gushers of the world. Apples come is all different forms (including organic) , dried, apple sauce, apple chips, fresh, and they are practically FREE! (Just make sure he doesn't get bored!)

    I have started a blog about these same issues. Not always focused organic, although it is something I do want to be able to commit to once I am out of school, but keeping the LoPro foods in check with nutrition recommendations and overall health (not just PKU focused). Check it out! … the blog is new and I am revamping it right now… and PLEASE feel free to email me with any concerns or specific questions. I am studying for my exam to be a registered dietitian right now and hope to be able to work with people just like you to successfully achieve both PKU and overall health and nutrition goals!

    Avatar of Grace

    thanks for all the advice i think i will at least try to stay away from the low pro cheese imitation inthe name of a food i just can't really handle right now…but i will try trader joes for some veggie cheese…right now he is on about 180mg of phe and that seem to be working ok so a little under 4gm he has is pretty severe i believe

    Avatar of Cook4Love

    Follow Your Heart is a great Low Protein Cheese that you can get in the Health Food Store.  It is a soy based vegan cheese.  The company that makes it reported in 2008 that the mozzarella is 2.02 mg/gm,  We use it all the time for pizza, eggplant parmesan, etc.  I think that the low protein food companies are working hard to start creating more healthy food options for our kids.  The Apple to Zucchini cookbook is also wonderful.  Cook for Love is my website and offers some delicious recipes for the whole family to enjoy.  

    Take care,

Viewing 6 posts - 1 through 6 (of 6 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional