A Day in the Life with PKU: Food Preparation

For this post series, I am going to discuss in each post a different task or activity involved in PKU management/treatment in daily life.

Saturdays are usually good days for baking.  We typically stay at home, and since Daddy is nearby, Mommy has more of an opportunity to cook.  Our most intensive baking projects at this time include loaf bread, rolls, and chocolate chip cookies.  This past weekend, I made a new loaf of bread.  The recipe I use is from the cookbook Apples to Zucchini, which is Virginia Schuett's newer low protein cookbook you can purchase directly through www.pkunews.org, or I am sure you can find it on Amazon or maybe other places as well.  The recipe is called Trish's Best White Bread, and it is an updated version of the recipe from the older cookbook (the red checkered one).  This recipe adds a few variations from the former, such as a combination of Welplan Baking Mix and wheat starch, Coffeemate creamer powder, and molasses for color.  The "magic" ingredient in any lopro bread recipe is Metamucil, which gives the bread fiber and shape.  And no, you cannot tell it is there!  This bread is delicious!

A few of the bread ingredients





The dough mixing in the bread machine

Yummy! Carson loves eating the dough while
we are baking.

Finished product! Soft, fluffy, and yummy on the inside.

I also use this same recipe to make rolls.  I put the same ingredients in the bread machine on the dough cycle.  When it is finished, I follow the instructions in the "older" red checkered cookbook to make and bake cloverleaf rolls (we like these best).  I make a batch and keep them in the freezer.  Whenever we plan or think there is a possibility we may be eating at a "sit-down" restaurant, I take a couple of Carson's rolls along so that he can have rolls (and butter!) while we do. 








For lunch that same day I made the last bread, I also made Carson a low protein hot dog.  It is made from a powdered mix, and they are the most amazing things I have seen!  We use the Country Sunrise Hot Dog Mix, which you can purchase from www.pkuperspectives.com.  Preparation time is nothing, just measure the ingredients, dump them in a bowl, mix well.  I learned the hard way that handling it bare handed is not a great idea.  I put my hand in that pink stuff the first time and it stuck all over me!  I could not get it off!  Plastic gloves might work well, but since I don't keep those in my house, I just rake the mixture onto a sheet of plastic wrap, wrap it up, and roll and shape it into a hot dog shape.  Then I unroll it onto a plate and microwave for 30 seconds...voila!  Instant hot dog!  Carson must also eat with ketchup (we are still not to bun stage yet, but then again, I never eat my hot dogs on a bun either! lol).

The powder

Add vegetable oil and water...it turns pink!

After mixing, roll into hot dog shape



Microwave just 30 seconds and this is the finished product!

 

Besides the occasional hot dog, lunch at the Rice household usually consists of some kind of sandwich.  For Carson, there are only two choices that he enjoys so far:  it is either a sandwich with Biscoff spread (which we buy at Walmart on the peanut butter and jelly aisle) or a grilled cheese (made with imitation cheese slices which we buy at our local grocery stores, which are great since they include calcium, unlike Cambrooke's very expensive cheese slices!).  We of course use the loaf bread we made (above).  These sandwiches are great options to take out when we are not sure if there is anything Carson can eat in a restaurant (especially if we go fast food), or if we are having a picnic lunch.

 

 

 

 



For breakfast, Carson typically eats Cap'n Crunch.  2/3 cup has about 50mg phe, which is not too bad for a meal by itself.  He drinks his formula, which I now mix with a bit of rice milk for added calcium (separate post later).  Some days he might eat a banana, or if we are at home he might ask for pancakes and eggs (or for brunch or even lunch!).  I use the Country Sunrise Scrambled Egg Mix, which is a powder to which you add oil and water just like the hot dog mix.  Scramble in a skillet and you have low protein scrambled eggs!  They are delicious!

Here he had toast, but now he usually prefers pancakes,
which I make using Cambrooke's MixQuick.

At suppertime, I find preparing things a bit more difficult.  We do have plenty of options and things that Carson likes to eat, but I generally prepare his food fresh instead of fixing up large batches of things ahead of time.  If I am cooking a big meal for the rest of the family, then I have lots of cooking to do to keep me busy!  I usually try to make things similar to what the rest of us are eating, but if I do not have anything, I will just ask Carson what he wants and he usually has a preference!  I almost always fix him some type of low protein pasta (we use Loprofin Fusilli) with a variety of sauces and some vegetables.  Right now I think Carson's favorite is pesto, so I use the Knorr packet of Pesto Mix and prepare a whole supply.  I can use this for him for several days, and Maggie and I will eat it as well (picky Marty doesn't like it!).  I cook a pot of noodles for us, a small pot for Carson, then the sauce.  We almost always have garlic seasoned cauliflower or broccoli in microwave steamable bags.  Makes for an easy and delicious meal!  I do the same with spaghetti and stroganoff (without meat in either one).

One of Carson's go-to meals right now is low protein macaroni and cheese.  This I have to prepare completely separate from our meal.  I use Loprofin Macaroni Elbows, boil 1/2 cup (dry measured), drain and set aside, then prepare the cheese sauce using the same pot.  I use Cambrooke's Shake n' Cheese powder and follow the directions on the container, but I only make 1/3 the recipe.  It calls for butter, which I melt in the pot first, then I use coconut milk creamer, because it is virtually phe-free, then add 1 Tbsp Shake n' Cheese and mix it with a whisk, heating it until it bubbles and thickens.  Stir in the noodles and we are done!  The phe for this portion Carson eats is estimated at only 15mg!

And now, for the best part, Carson likes to start off supper almost every night (when possible) with....

SALAD!!!!!!!!!!

I cannot believe he actually likes salad now!  I am one happy momma!  It makes for yet another great option, especially when we are out, to get that tummy full with something healthy.  I just weigh out salad pieces on the gram scale and pour a bit of Italian dressing (which is phe-free) and he likes to pick it up with his fingers and dip it.  Nothing fancy, but it is awesome!  Got me eating more salad too.

We do also have several convenience foods we can use on days when cooking is just too much, and we can just heat these up in the oven or microwave.  We keep Cambrooke's Mini Pizza Pockets, Go Pockets Broccoli and Cheese, and Toasted Pierogi (which is kind of like breaded/fried ravioli filled with lopro cheese and potatoes).

For dessert, there are only a few things I have to bake that Carson will eat.  He loves chocolate (like his momma!), so his favorites are chocolate chip cookies and brownies.  For the chocolate chip cookies, I use the Butterscotch Chip Cookie recipe off Cambrooke's website (which uses MixQuick), but I substitute butterscotch chips for 1/2 cup Chocolate Dream dairy-free chocolate chips (awesome!).  For brownies I use Maddy's Fudge Brownie Mix (from a can).  It is super-duper easy, much like our regular boxed brownie mixes.  We just add oil and water, mix, pour in the pan, and bake.  I also like to add 1/4 cup of the dairy-free chocolate chips to these, which I started just because the chocolate in the brownie mix tasted too "fake" to me.  Carson loves it!

Carson's famous chocolate chip cookies!  Yummy!

These were made fresh today by Carson's request!

On the occasion we attend a party of some sort, including birthday parties, or anywhere there might be cake or cupcakes, I try to always come prepared with a cupcake for Carson.  I make batches of cupcakes and keep them in the freezer, so that when we are going I can get one out, put it in a plastic individual cupcake holder I bought for this purpose, and decorate it with icing and sprinkles.  I like to use Pilsbury's (since it's phe-free) icing in a spray can because it is super easy...just squirt it and go!  I have two different kinds of cupcakes so far:  both Maddy's Yellow Cake Mix, one made chocolate from the recipe on their website by adding a bit of cocoa powder and instant coffee!  He likes these okay, but usually only eats a few bites and mostly just eats the icing.  I am going to try some different homemade recipes in the near future.

For his own birthday with our family, on his actual birthday, I usually make him his own low protein cake and decorate it myself.  I am not very good at it, and someday will probably get someone more professional to decorate a really good-looking one (I will have to bake the cake part and take it to them), but I finally found an easy cake recipe that everyone liked.  I used a recipe from a free cookbook that uses Maddy's Yellow Cake Mix and Brownie Mix to make a marbled cake.  Carson ate every bite.  I hope this continues to be successful!  I plan to get a little more adventurous this year and make a character-shaped cake, maybe even a tractor!

I think that sums up most of the foods I actually prepare, cook, and bake for Carson that are separate from our own.  Other things that make it onto his menu are things we can get anywhere, like applesauce, bananas, potato chips, and dry cereal.  Eating out is a whole different story!

I also think that writing this very long post felt like more work than actually making all this food!  It seems like a large amount of work, making separate meals all the time, but we are used to it.  I have been doing it for almost five years now.  That does not mean that it is not tiring sometimes, because it is.  But I am so thankful to be able to be a low-protein chef for my son, and learn new things every day.

If you are reading this and live in Alabama, or know someone, who might need some support with PKU-related things, I want you to know that there has been an Alabama PKU Support Group started and growing on facebook.  It is a private group, but if you want to join the network I highly recommend checking it out!  I am loving it!  There are also great national support groups, like PKU Worldwide Support Group, and Cook for Love on facebook.