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! http://www.pkuandhealthytoo.wordpress.com … 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!