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Recipes
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Roasted Butternut Squash and Sweet Potato Soup
Fall has arrived and lately I’ve been craving butternut squash. To satisfy that craving, I tried my hand at a new soup this past weekend that incorporated both a hearty butternut squash and a couple sweet potatoes. Combined, the two vegetables make a high-vitamin, fiber-dense dish that’s also very tasty!
Green Pepper Soup
Here’s a super easy, one-pot dish that’s become a favorite of mine for making in bulk and taking it for lunch during the work week.
Zucchini Stroganoff
I simply hadn’t developed the skill very much. But for the most part I think it’s because I was torn between my idealistic desire to eat mostly whole foods, and the reality of being a young, inexperienced, low- budget, convenience-seeking mom cooking for myself with PKU plus a husband with opposite nutritional needs.
Eggplant Cafe Rio Style
I
tried my hand at making homemade Cafe Rio for my husband and I. Cafe Rio, for those of you who don’t know, is a very popular and delicious restaurant in Utah, where I lived for 6 years. Ever since ordering an eggplant dish at a Persian restaurant, I had been thinking I should experiment with eggplant as a meat substitute. So, thus “Sweet Pork Eggplant” was born!
Home Blood PHE Monitor: A PKU Pregger's Dream
During the 2014
National PKU Alliance
Conference this past summer, an update was given on
the development of a home phe monitor
, a device that would allow people to check their blood phe levels immediately from home. In this video interview, produced by
Kevin Alexander
, Dr. Tom Franklin, chair of the National PKU Alliance Scientific Advisory Board, says that after receiving 128 proposals from scientists representing seven different countries, nine were selected in April 2014 for Phase II and were required to submit detailed concepts for the monitor by July 2014.
Calories- Why You're Not Just Counting PHE During Maternal PKU
Like most women, I am no stranger to counting calories and limiting the amount I eat each day in order to lose or maintain weight goals. When
returning to the low-protein PKU diet
in January 2013, consuming a higher amount of calories was definitely a major concern of mine. In fact, I would say that calories – more so than taste – was a key decision factor for when
selecting a formula
. Let’s face it, when you’re drinking formula three and four times a day, those calories can rack-up fast!
Teriyaki Jackfruit Kabobs
I have just discovered ‘Jackfruit’- a fibrous, meaty textured fruit that’s highly adaptable for use in the PKU diet and practically Protein free! It has a firm flesh, and relatively bland taste but absorbs flavours and cooks very well. It’s available in canned form either in syrup or brine, for this recipe I used the Jackfruit in syrup which I soaked in water for a few hours to reduce the sweetness.
Summer Clinic
I hadn’t been to my clinic in a while. I went the the hospital in June and got a real blood level done. The dietician ordered a full amino acid panel CBC folate b12 and some other things. Eventually the levels came back. My phe was just over 1500 and my tyrosine, B12 and folate were low. A few days later I got a call from the hospital booking me for a clinic appointment.
Fresh Pineapple Fruit Salad
Easy, yummy pineapple fruit salad.
Do ‘protective mutations’ hold a cure for PKU?
What are your thoughts on the matter? Would you willingly participate given the chance of new treatments or even a cure for PKU? Or does the thought of submitting your DNA have your internal privacy alarms sounding off? Either way, I’d be interested in hearing your thoughts. And if anyone from the PKU medical community is reading this post, please also chime in!
Sports & PKU
When I was a child in elementary school, my clinic and my mom pulled me from physical education class. I was told it was because I was breaking my muscles down to fast and that it was breaking down the PHE in my own bodies protein. I was also told that it could elevate my levels. ( later in life learning how false this is!!)
Roasted Garlic Vegetables & Penne
This is an adaptation of a recipe that was recently served to my entire family over the Memorial Day weekend. It originally included smoked sausage, but that was obviously omitted for my portion. I liked its flavor so much I made it again last night (and probably will again this evening).
Berry Pops
With Summer around the corner or already here for some. In my first attempt at popsicle making I used the frozen triple berry medley and rice milk. And I threw in a strawberry popsicle I had in the freezer. These were pretty hearty -– a little berry-heavy, so next time I would probably do more rice milk. But overall they were pretty good! Definitely cooled me down on a hot afternoon.
Stuffed Peppers
S
tuffed peppers PKU friendly as well as traditional.
Traveling PKU Style
A while ago while packing for a trip I thought it might be of some interest to some newer PKU Moms, and also my family and friends
Low-Protein Nachos
My husband and I have been brainstorming a few PKU-friendly party foods
A Pregnancy Story
Sometimes it takes someone asking questions to get your thoughts out. Well, Amanda Cosburn has been asking for stories.
Sweet Potato Casserole with Bananas
This recipe is an adaptation of one I recently saw demonstrated on one of our local weekend morning news shows. Using roasted bananas provides a natural sweetener and also adds fiber and potassium into the PKU diet.
PKU Diet and Hair Loss
Hair loss experienced by PKU patients returning to the low-protein diet is temporary.
My Passion
Diet Compliance: How we can better empower people with PKU to follow the diet and reap the benefits?
The Economic Side of PKU Part 2
The annual cost of medical formula for PKU averages $7,100 per year, per person.
The Economic Side of PKU Part 1
Just to put things into perspective, here is a list of typical foods that a PKU person would eat daily and the cost of the food items compared to "regular" food items....
What I Learned About PKU From 8 Million Books
I wondered what this nifty tool could tell me about the history of PKU and how its treatment has evolved over the years.
Diet vs. Addiction
I did a little bit of research on the things that addicts say and here are some of the ones that I found that apply to myself and my PKU.
Maternal PKU Mentor Program
I can't wait to become a Maternal PKU Mentor and start helping women have happy healthy babies.
How to save money with a PKU herb garden
Those of us living with PKU do not need a reminder about just how expensive it is to remain on-diet; however, there is certainly a bit of vindication whenever a peer-reviewed, academic journal reiterates this point.
Is taking-on maternal PKU a rational decision?
Will I ever feel confident enough to take the next step and transition my “return to diet” into a “preconception diet?”
Q & A With PKU Advocate,
Kevin Alexander
"I dream not simply of cures, but the endless possibilities for our world when the 250 million living with rare diseases today can invest their full energies into improving this world, not simply surviving or maintaining their health."
Low Protein Chocolate Pudding
The problem is when we have pudding. Lily's getting tired of her Hunt's lemon pudding cups (0 phe). She does love them but would like a little but of a variety.
Now Onto Reality
Well, this past month has been an interesting one. As you all know, or should know from my previous posts, I did the 30 day Kuvan trial. I never thought it would entail so many things. I had to be very careful in every aspect of my life, which is not uncommon considering I have PKU.
Protein and Self Care
I’ve been impulsive about food for a month or so now, and I’m starting to feel the effects, so I’m getting back to basics...
Viennese Pancake Soup
I often bring cook books from my travels. Today we’re cooking a Viennese traditional soup with pancakes.
Garlic Roasted Eggplant Spaghetti Sauce
During this long, President’s Day weekend, I was looking for ways to shake-up the spaghetti and marinara I seemed to be eating all the time. I wanted to try something new and eggplant is something I did not have a lot of experience cooking.
Planning a PKU Menu
I’ve said this before on PKU Parlor, but the ability to plan and organize is going to be instrumental for me adhering to the low-protein diet.
Portabella Stuffed Peppers
Earlier today, I decided to try my hand at adapting this family recipe for a low-protein PKU diet and I was extremely pleased with how well this dish turned out!
Travelling Stories
Getting through airport security with formula can be interesting. I bring my formula for the day in a little cooler. Now, as we all know, we are not allowed to bring liquids through. But I do it every time!
Returning to the PKU Diet
Going from a completely liberated diet to one that consists of limited protein intake can be rather intimidating when you look at it from a 25,000-foot view.
Meal Tip and 'Goop' Recipe
One big thing I am sure we all do is meal adaptations. Especially in a family, this becomes extremely useful.
My Veggie Day Breakfast
I’m continuing in realizing my New Years revolution. One of them, as I already wrote before, is, that I want to have veggie-days, only fruits, low protein milk and veggies allowed, of course water, tea and soup, too.
My Secret to Succes: The Target Food
This is great because I don't have to try to estimate the phe of dinner and cram food into her when she wants to be done.
PKU Letters to HHS Make an Impact
Aleksandra Pisarek wrote that she is the mother of an 8-year-old boy with PKU who will require lifelong treatment to avoid brain damage.
I'm Pregnant!
I am three months along. I wanted to post about this because this is an important topic for phenylketonurics. Some people have asked how being pregnant is affected by PKU. So here’s my answer!
Experience is...
Do you make yourself a victim of what happens to you? It can be very tempting, but it won’t get you anywhere.
PKU Christmas for Toddlers
From Christmas treats to gifts, the whole family had a good time making a few tweaks to make Christmas special for my kiddo.
Billing PKU Formula According To Calories
Here’s something you may not know when it comes to the business of distributing and paying for PKU formula.
Low Protein Sugar Cookie Cut Outs
Lily also used colored sugar to decorate the cookies. Lily had a blast decorating the cookies, but the best part was...eating them!
Low Protein Pierogie Soup
At first Lily was a little hesitant on how to eat the soup. We had to show her how to not let it dribble down her chin! Once she got the hang of it, she loved it.
Low Protein Xmas-Beginnings
Recently on the SHS/Nutricia Community Page on Facebook a Loprofin Fruit Cake recipe was posted up especially for Christmas and today I attempted it.
Holiday Party Hoppin'
While most holiday parties are likely going to present plenty of off limit high protein foods, I have learned some tricks so I can still enjoy some yummy food.
Phe Allowance vs. Phe Range
For as long as I can remember I have always been given one specific number in regards to my phe tolerance. I have always been told to consume...
Low Protein Pizza Bagels
I'm trying to get a little more creative with Lily's food. We absolutely love the convenience of ready made packaged items, but I'm wanting her to try new...
An Open Letter to HHS
So that you are reminded that your decisions will impact real people, here is a brief background on me and my experience living with PKU: Thanks to newborn screening, I was diagnosed with PKU at birth and immediately placed on a low-protein diet.
Make a Difference
You'll never make an impact on this world if you don't just step out and do something.
Why am I Doing This?
I think it's healthy for me to talk about it, especially because I've realized all of this life experience motivates me in my PKU and new born screening advocacy.
