We have to determine exactly how much phenylalanine is in everything Laurel eats. To do this we weigh what she eats and then multiply the weight by the number of milligrams of Phe per gram of the food, which is published in the Low Protein Food List, published by Virginia E. Schuett.
Virginia E. Schuett has been publishing and updating the Low Protein Food list since 1995. Ms. Schuett is a nutritionist and founder of National PKU News, a non-profit devoted to providing news and info and people living with PKU. Over the years she tracked down the phenylalanine content of thousands of foods by contacting companies a variety of ways. Protein is listed on the nutritional facts of all food items but not the specific breakdown of which proteins.
Virginia E. Schuett has been publishing and updating the Low Protein Food list since 1995. Ms. Schuett is a nutritionist and founder of National PKU News, a non-profit devoted to providing news and info and people living with PKU. Over the years she tracked down the phenylalanine content of thousands of foods by contacting companies a variety of ways. Protein is listed on the nutritional facts of all food items but not the specific breakdown of which proteins.
The book also includes baking ingredients, herbs, and low protein products which helps when trying to create low protein versions of recipes we find on the internet (Pinterest, blogs, etc). Sometimes with just a few omitted ingredients or replacements we could have a recipe that is suitable for Laurel.
A Few Substitutes We Use Frequently
We are forever grateful for this index of nutritional facts in the Low Protein Food List but with such a wide variety of foods listed it is not always quick to navigate. I have been trying to figure out the best method of keeping just the numbers for the food Laurel eat, as easy to access as possible for all of the people that need to use it.
We started with “The Foot”.
We added to The Foot by hand as Laurels food repertoire expanded. It consisted of mostly fruits and vegetables but we would still have to refer back to the foot list book for a lot of items.
My first attempt at using technology to keep track was by using a Google Document that everyone who watched Laurel had access to.
It didn’t catch on.
I have checked out Android and iOS apps but none really stuck my fancy.
Current List
We currently keep a printable word document that is updated periodically with new foods. It is kept stuck in The Book for everyone to use.
My other idea is to create a Pinterest board with photos of all the items Laurel eats, in alphabetical order, with the Phe listed on each of them. Visually appealing...easy to access…maybe slightly too ambitious.
We shall see what the future holds for keeping track of Laurel’s Phe but in the mean time feel free to share any stories you have about tracking Phe.
Hi! I have 2 year old twins with PKU, and just stumbled upon your blog. Just the couple entries I've read lead me to believe you guys are awesome and have a similar attitude towards PKU as my husband and me. :) I too have been looking for a good app to use to track the kids' diets. If you find anything, please write about it! Wish I knew how to create them! Thanks for blogging!
ReplyDeleteThanks for sharing your experience and recipes! I am a 30-year-old with PKU, and my sister and I are always coming up with new PKU meal and treat ideas. Your French Toast on Pintrest caught my attention - can't wait to try it! It's so great to have the resources we do today (increased food options, internet, etc) to make PKU so manageable. I haven't found luck with the apps either - I keep a running document of low-pro food for myself; even though I know what I can and can't eat, it is good to have a reminder for variety and also when I get a little off track, it helps me refocus. Thanks for sharing your experience!
ReplyDelete