Merry Christmas!

I am American, and I am Christian, and I celebrate Christmas. So once again MERRY CHRISTMAS!!!!! It's a wonderful time of year when we celebrate the birth of our Savior Jesus Christ. This year I went to my Grandparent's house for Christmas eve and we sang songs, ate soup, and played games. It was a lot of fun. Well for Christmas Day dinner (lunch... but we call it dinner) we actually had Buche De Noel Cake. Which is this French cake shaped like a log. My sister made it and it was good. :) She got it from her French Class. But the recipe I'm posting is offline... I hope it's the same one. Serves 6.

Ingredients

• 1 cup heavy cream
• 1/4 cup confectioners' sugar
• 1/4 cup unsweetened cocoa powder
• 1/2 teaspoon vanilla extract
• 3 egg yolks
• 1/4 cup white sugar
• 2 tablespoons and 2 teaspoons unsweetened cocoa powder
• 3/4 teaspoon vanilla extract
• 1/8 teaspoon salt
• 3 egg whites
• 2 tablespoons white sugar
• confectioners' sugar for dusting

Directions

This recipe's Ingredients were scaled to yield a new amount. The directions below still refer to the original recipe yield of 1 Buche de Noel.

1. Preheat oven to 375 degrees F (190 degrees C). Line a 10x15 inch jellyroll pan with parchment paper. In a large bowl, whip cream, 1/2 cup confectioners' sugar, 1/2 cup cocoa, and 1 teaspoon vanilla until thick and stiff. Refrigerate.
2. In a large bowl, use an electric mixer to beat egg yolks with 1/2 cup sugar until thick and pale. Blend in 1/3 cup cocoa, 1 1/2 teaspoons vanilla, and salt. In large glass bowl, using clean beaters, whip egg whites to soft peaks. Gradually add 1/4 cup sugar, and beat until whites form stiff peaks. Immediately fold the yolk mixture into the whites. Spread the batter evenly into the prepared pan.
3. Bake for 12 to 15 minutes in the preheated oven, or until the cake springs back when lightly touched. Dust a clean dishtowel with confectioners' sugar. Run a knife around the edge of the pan, and turn the warm cake out onto the towel. Remove and discard parchment paper. Starting at the short edge of the cake, roll the cake up with the towel. Cool for 30 minutes.
4. Unroll the cake, and spread the filling to within 1 inch of the edge. Roll the cake up with the filling inside. Place seam side down onto a serving plate, and refrigerate until serving. Dust with confectioners' sugar before serving.

Anyway it was really good. And I was surprised that we could have it! It's a nice holiday treat for the season. Best of Luck!!

Why I don't take Kuvan

A couple of years ago I was invited to this conference my dietitian thought I'd be interested in. It was about Kuvan. I went and listened, but afterward... decided I didn't want to do it. Here's why:

1. I'd need to get more tests done than usual- I don't like blood tests. Especially finger prics which would be the way I'd have to get it done. And so the idea of MORE tests... it makes me shudder.
2. I plan on having children in the future- Kuvan wasn't tested on pregnant woman. So either I would have to stop using the tablets and switch back or I would be tested on even MORE intensely! I don't want to risk my child's health so I can have a piece of bread. And even if I stopped using Kuvan while I was pregnant it would be harder for me to go back knowing how some things taste.
3. I'd have to take a TON of pills!- I can't remember the exact number of pills I would have to take. (And even if I did it's based on weight so it would have changed anyway.) But I watched a British documentary on utube about PKU (just for fun) and they talked about this 14 year old soccer player boy who had to take 60 pills a day!!! I'm older than him and would probably need around 80 pills a day! It's ridiculous! I can barely swallow 1 pill let alone 80! All for a piece of bread!
4. It's not a cure for PKU- It is a step in the right direction, but it's not a cure. I would still need to be in a low-protein diet. It's just that I could have more "wheat foods" like bread or pasta. I'm already comfortable with the diet I have. I can live without those things.
5. It may or may not work anyway- I have Classic PKU, which is the most severe type there is. It only works on 40% of PKU'ers with classic PKU. And the chance it works on Classic PKU?? Less. But you never know if you don't try! I just chose to be happy with what I'm doing now.

There are lots of PKU'ers that do take Kuvan, and that's great for them. But I don't take it. I like my life and I can live without a piece of bread. It seems like a miracle that we can take pills to help lower our levels. But you know what? There's going to be better things out there someday, I've decided to wait for them.

If you ARE interested in Kuvan the official site tells us how it works:

How KUVAN Works

Working at the source of the problem

In the body, the enzyme called phenylalanine hydroxylase (PAH) converts phenylalanine (Phe) into tyrosine in the presence of tetrahydrobiopterin (BH4). BH4 is a natural substance found in the body that helps reduce Phe to safe levels in the blood.

In PKU, the PAH enzyme doesn't work well and too much Phe builds up in the blood. High levels of Phe affect the brain if left untreated.

The active ingredient in KUVAN is a pharmaceutical version of BH4. It works in the same way as your body's BH4.

KUVAN adds more BH4 and stimulates the PAH enzyme to “wake up” and process Phe in PKU patients.

The PAH enzyme begins to convert Phe to tyrosine, and helps to keep your blood Phe levels low.

And here's a site with answers to your questions! http://www.kuvan.com/hcp/kuvan-faq.html

Thanks for listening to my rantings!!!! Share if possible!

Being Thankful

It's Thanksgiving time! A time to be thankful and a time to eat. :) This year I've realized that I'm thankful for 3 unusual things:

1. I'm thankful to have PKU
2. I'm thankful for pain
3. I'm thankful for troubles in my life

Let me explain.

• I'm thankful for PKU because it's a big part of who I am. Without it I don't know who I'd be. I can't even imagine what I'd be like. Would I still be fit or would I be anorexic or even overweight? Would I take as much care as I do with my food or would I eat whatever? I think that the reason I have PKU is for my own health.
  
• I'm thankful for Pain because it is a necessary thing. Pain tells you when your body is hurting and when you need to stop. There are people who have to be very careful because they can't feel pain. They wear helmets everywhere. Pain warns you and they don't get that warning. So it's dangerous.
• I'm thankful for the troubles I have in my life. They could be worse, I know that. I also know and see that I learn and I grow from my troubles. Once it's over I am a better person. And that experience? Fades away like in nightmare in the morning.
  

I know they are odd things to be thankful for, but I am. What are you thankful for? What are some of your thanksgiving traditions?

With a few changes a lot of Thanksgiving foods can become PKU. (Though I'm still waiting on a PKU turkey) Mashed Potatoes can be made with water instead of milk, green bean casserole can also be made without milk. Then there are lots of PKU rolls you can make. Olives are big at Thanksgiving in my family. Fruit salad, and green salad are good dishes. Then there are the pies. Fruit pies are good. :) (if you want to make them lower in PHE you can use a graham cracker crust)

It's easy to fill up your plate on Thanksgiving. Even with PKU!

HAPPY THANKSGIVING!!!

A Time to Eat

You know your life is crazy when you don't have time to eat. You're too busy but you know it's important to eat because if you don't you won't have enough energy to finish all you need to do. But there still isn't time. And when there is time you're too tired to make anything. That's how it is for me right now. It's crazy on it's own. But when you have PKU? That makes it even more important to eat.

It's not just that we have to not eat high in protein foods. We have to eat the right AMOUNT of phenylalanine. Too little is as bad as too much.

When you have PKU you have to make SURE you eat all your PHE (phenylalanine) for the day. At my house that's what saltine crackers are for. One saltine cracker is roughly 1 equivalent. So I figure out how much PHE I've had today and how much I need to be in my goal. Then I have that many crackers.

Let me tell you now, lately those crackers have been a lifesaver. Because I really am busy. Too busy to eat, too tired to cook. I survive on crackers and formula. :)

PKU Pumpkin Cookies- recipe

My family loves cookies. Sunday nights it's common to find someone in the kitchen baking a fresh batch of cookies. (Especially after a cookie fundraiser.) As a PKU'er cookies are rather high and so my sister usually only have 1 or 2 a day; but it's REALLY tempting to take another. So naturally I want to find some simple PKU cookie recipes that I can freeze and make some Sunday evening.

Today I made Pumpkin Cookies (in honor of Halloween) with my friends and I wondered: Is there a recipe for PKU Pumpkin Cookies??? So I did what any other semi-tech savvy teen in America does... I googled it. :) Here is the best recipe I could find. I'm going to have try it and take pictures.

Pumpkin Cookie Recipe

1 C brown sugar

1 C white sugar

3/4 C butter or margerine

15 oz. can pumpkin

2 t baking soda

1 t baking powder

1 t cinnamon

1/2 t nutmeg

1/2 t ginger

1/2 t salt

3 1/2 to 4 C of Wel-plan baking mix

Frosting:

1/2 C butter or margerine

1 C brown sugar

4 T Rich's Coffee Creamer or Mocha mix (or other liquid creamer - adjust phe as needed)

3 C powdered sugar

Cookies:

Sift dry ingredients. Cream sugar and butter. Alternate dry ingredients with creamed mixture and pumpkin. Drop by spoonful onto cookie sheets. (Dough may appear soft, but cookies form and rise nicely). Bake at 375 degrees for 8-10 minutes.

Frosting:

Melt butter and brown sugar, bring to a boil. Boil for 2 minutes. Add non-dairy creamer and return to a boil. Cool. With beater, add sugar gradually. Final consitency should be spreadable. Frosting can be colored or Halloween decorations added.

Cookies per recipe - 70; Phe per cookie - 5 mg

Recipe from Ahn H, mother of Stephanie and Samantha, from MN PKU Foundation 2000 calendar.

HAPPY HALLOWEEN!! :)

Happy Hallow's Eve!

Halloween. The time of year where you can dress up as someone else and get free candy for it. :) I may be a teenager but I still enjoy trick-or-treating with my friends. It's a blast! I remember one year when I was little I wanted to be SuperMAN not supergirl... SUPERMAN! (That was also the year I cut my own hair.) My mom ended up putting a bow in my hair so people would realize I was a girl.
Yes, there is candy out there I can't have because of my PKU. (Anything with peanut butter, artificial sweetening, nuts... and I think that's it.) But ever since I was little I'd just do what any other kid would. I'd trade. ;) Anything I was allergic I'd just trade to a friend or to my parents for some of their leftover Halloween candy. It's never been a big deal. Why should anyone make it a big deal? Houses where they let me pick out what I want are great. But if they slip it into my bag it's okay, I'll just trade it later.
The ONE thing that annoys me most is: the foiled covered chocolate. I don't KNOW if it has peanut butter in it! So I have to either break it in half before I eat it or let someone else taste test it for me. (And if I let someone taste it you can be sure there won't be much left for me if it was fine.)
Free candy?? Yum. :) I love Halloween. I even can accept the lame houses that hand out carrot packages. *Yes house that passed out carrots last year I'm talking about you. Unfortunately my Best friend can't accept you so we're not stopping there again this year.*
Halloween is oodles of fun. And it's not really different for PKU'ers, we just have to eat it slower. Which is always the goal right? ;)

Happy Halloween!!

Another article

Remember that Dr. Koch article from my last really short post??? I found another article about him. http://www.latimes.com/news/obituaries/la-me-richard-koch-20111008,0,5500503.story I personally think of Dr. Koch as the PKU person's hero. He did so much for us. It is because of him that I can think, talk, go to school, I owe him so much. He'll always be a hero of mine. Rest in peace Dr. Richard Koch, you lived a long successful life. :)

PKU Hero

I came across this article today: http://www.pkuheroes.org/drkoch/. It's about an amazing man who has done so much for PKU'ers like me. Without him I would be mentally retarded. Thank you Dr. Koch!

School Lunches

Some schools have vegetarian choices. My school has a salad, but it's the longest line in the school. So it's not worth it. My past schools haven't even had this choice. I could fight for more choices. But after the school "agree" to do it in my experience... they don't. I once fought for microwave rights in elementary school. It was a waste of time because they didn't let me anyway. They were just avoiding a big scene. So I bring home lunches. It's healthier and cheaper anyways. Plus you don't have to wait in a long line for it. It can be fun too if you get creative. I rarely have time to be creative but it's fun when I am.

Good things to put in a PKU'ers lunch: fruit (apples, pears, grapes, fruit cups...) and vegetables (carrots, salad, celery, raw broccoli...). You can make bread for sandwiches, put vegetable soup in a thermos, pack a couple cookies. You could add a container of ranch to dip your veggies in. For a while I would pack these "fruit chillers" in my lunch with an ice pack (basically it's sorbet). Fruit leathers and fruit snacks are excellent!

Tip: Frozen grapes turn into goop when in your lunch. They taste excellent at home but not on the go.

My lunch on the go is usually an apple, fruit snacks, fruit cup/lemon pudding, and it depends what else in the house at the time. But it has filled my throughout my school life so it works for me.

It's nice to have a dependable menu. Just in case I don't have time to think about what to pack. But sometimes change is good. Get creative! Add a sauce, pack a thermos. smoothies are fun! Just because you bring home lunch doesn't mean you have to bring dull things. You can pack lunches that will make school lunch kids drool! I have (that would be the smoothies). Try something new! :) And have a good day!

Tastiest Way To Get Rid Of Zucchini!

Dear readers,

How was your summer? As you could probably tell I've been a very busy person. I still am, so right onto business we go. :)

Recently my house has been overrun by evil zucchini. It's like a curse we eat/freeze/deal with 1 of them and my dad goes and picks 4 more! He's crazy for planting as many plants as he did. But because we've been overun by zucchini we've been looking for tasty ways to get rid of it. Here by far the yummiest/ weirdest recipe yet! (Thanks to allrecipes.com)

Zucchini Cobbler

Ingredients (serves 25)

• 8 cups peeled, chopped zucchini
• 2/3 cup lemon juice
• 1 cup white sugar
• 1 teaspoon ground cinnamon
• 1/2 teaspoon ground nutmeg
• 4 cups all-purpose flour
• 2 cups white sugar
• 1 1/2 cups butter, chilled
• 1 teaspoon ground cinnamon

Directions

1. In a large saucepan over medium heat, cook and stir zucchini and lemon juice until zucchini is tender, 15 to 20 minutes. Stir in 1 cup sugar, 1 teaspoon cinnamon and nutmeg and cook one minute more. Remove from heat and set aside.
2. Preheat oven to 375 degrees F (190 degrees C). Grease a 10x15 inch baking dish. In a large bowl, combine flour and 2 cups sugar. Cut in butter with pastry blender or two knives until mixture resembles coarse crumbs. Stir 1/2 cup of butter mixture into zucchini mixture. Press half of remaining butter mixture into bottom of prepared pan. Spread zucchini mixture over top of crust, and sprinkle remaining butter mixture over zucchini. Sprinkle with 1 teaspoon cinnamon.
3. Bake 35 to 40 minutes, or until top is golden. Serve warm or cold.
   

It's a pretty weird recipe when you think about it. Zucchini in a FRUIT dessert? Yuck! But zucchini actually picks up the taste of whatever it's cooked in. And this recipe makes the zucchini taste like apples! I promise you! When we served it to people who didn't know it's zucchini-like qualities they complimented us on our Apple Cobbler. Their jaws literally fall to the ground when we tell them the truth. It's that good. I couldn't get my mind over how it tasted like apple cobbler yet I knew it was zucchini cobbler. Trust me you've GOT to try this one! :)

PKU Pen Pals

When I was little I always wanted to know someone besides my sister who had PKU. I wanted a pen pal. I person from another part of the world, who could understand me. I never did get one, though mom tried to look into it for me. I used to dream how it would be to write back and forth becoming instant best friends. Then suddenly meeting each other for the 1st time. It was like a story for me. A big fairy tale.
I went to camp PHEver, years later and made a bunch of friends. It was around then I guess when I realized that it's nice to have friends in another state. I wished... I still wish that somehow the PKU kids would get together and bond here like they have in Texas. (where camp PHEver is.) The hospital plans little kid parties. No one my age goes to them. I try to go just in case I meet someone my age there. I want friends with PKU. Friends in exotic places all around the world, and I want friends here. Right at home, that I can see more than once every other year.
I guess this post is call out. I didn't intend for it to be one. But nevertheless it is. If you have PKU comment. I want to know how many PKU'ers I'm actually writing to. I know not many (if any) will do this. There aren't that many PKU'ers in the world and no one really comments or goes along with the writer. I want to get to know you. I want to make a lot of PKU friends. That dream of a pen pal... never really died I guess. It just got tucked away for a while. I want input. I'll take anything but swearing. It's a bit lonely having PKU and not having anyone to constantly talk to. I'm glad I have a sister for that reason. But imagine just for a moment... having a whole network of friends that you can talk to. It would be the most amazing thing in the world.

Road Trip!!!

It is a common practice among US citizens to eat at fast food restaurants when on a road trip. It's fun, a chance to get out of the car, and pretty cheap (depending on your group size). But for PKU kids it can get pretty tiring to eat at fast food places (even if you don't repeat a single restaurant). Because in Fast Food places our typical choices are salad or fries. It's that way at McDonald's, Wendy's, Arby's, Artic Circle, Burger King, and other places like that. Some restaurants don't even HAVE good salads!!! So it's really refreshing to find something else we can have on the menu. With the Health Movement that's sweeping across the U.S. it's actually getting easier for us in some ways. Fruit is more common on the menu, which is a HUGE plus for me!!!! Usually at home I don't eat salads because I eat them so often on the road.

So fast food... it's fun right? Sure. But you want to know what's better? PICNICS!!!! I have a lot of fun on picnics! Especially when there's a playground nearby! If you want to stretch out your legs from sitting in the car, a nice playground will do the trick. Or a field with a ball if your too grown up for a playground. Exercise after eating is nice. Maybe they really do have a point in Elementary schools by having recess after lunch! Road trips are fun. Picnics are great. Too much fast food= repetition for PKU'ers. Do you get it??? :) I sure hope you do if not try reading it all over again but slower that usually does the trick for me.

Restaurant Review #2

Last night I had the opportunity to go to this Frozen Yogurt place with my family. It's called Yogurt Bliss and has this really unique atmosphere I really enjoy. Items on the menu? Frozen Yogurt, soda, water, SORBET, and waffles. Yes waffles, which in my opinion is a tad bit odd but cool at the same time. It's a self serving restaurant where you can grab a cup and find an ice cream flavor that you want. It's in a machine where you pull the lever and it comes spiraling out. They only have one sorbet at a time but what they have it extremely delicious. Then you head to the toppings cart. It's full of candy, hot fudge, fruit, Carmel, chocolate. They actually decide the price based on it's weight. (They weigh it on a scale). Which it a fantastic unique way of doing it because you can get the amount you want for a fair price. I had strawberry-kiwi sorbet with white chocolate chips, fresh strawberries, and kiwi on it. It was fantastic!!! I wished I could back and get some more to be honest. :)

Now on to the atmosphere... the walls were painted each of different color (green, purple pink, and white), the ceiling was purple, and the floor was white with squares of all the colors used. There were white tables with chairs all around so you could enjoy your treat there. AND there was a white couch. How many restaurants have you been to that has a couch. It was all very hip, and casual. The radio was playing on a good station with several songs I enjoy, but it wasn't too loud so we could talk. People came in and out constantly but it wasn't crowded.

When it comes to PKU friendliness though... I'm not going to lie. Out of all the flavors there PKU kids could have 1. Which is going to make me have to rate it 4 on the PKU Friendly Scale. The reason it gets a 4 is because the flavor changes constantly, and is very unique. But it really is a neat place that I enjoy. For anyone who isn't a PKU'er but health cautious it doesn't have ice cream it has frozen yogurt which is a healthier choice.

Have a great summer!

My favorite dessert in the world!!!!

Ice Cream. My favorite dessert in the world. (I also really like smoothies.) Sometimes I think I could live on it. I almost hear people, who have read my blog since I started, mumble in confusion. "Isn't ice cream dairy?" "Wasn't dairy one of the things she said she was allergic to?" *Checks 1st post* "So she's cheating on her diet??" "What?!" Don't worry I'm perfectly healthy and have not been cheating. It's true dairy is on the no-no list. I can't have average American cow-made ice cream but there are a lot of other types of ice cream I can have.
There's Rice Dream Ice Cream which is made with rice milk as opposed to cow milk. It's healthier for us but definitely not the healthiest. There's sherbet which has a little bit of cows milk but less than regular ice cream. Homemade ice cream is probably the creamiest while having no milk. You just make it using water and a powder (if you want the name just comment below and I'll find it and post it). Thanks to America's healthier food obsession there's Coconut ice cream too now.
Just so you know: A coconut is NOT a nut! (I get that comment a lot) It is either a legume, because it can be turned into oil, or a fruit. There seems to be a lot of debate about it, and I can't find a positive resource to confirm which one it is.
Anyway, coconut ice cream is one of the healthiest choices. But sorbet beats them all. Though it's not the creamiest sorbet is entirely fruit made.
My favorite??? I don't know I just like ice cream a lot. I would say whatever I'm eating at the current moment. But as I am not eating ice cream at this moment (merely dreaming of it) I cannot tell. But I do dare you to try one of these (PKU or not) just for fun. See what you think! Maybe you'll find a new favorite type of ice cream! If you do tell me all about it I want to hear!

*I'm not sure if these products are available outside of the USA. You can try to find them. I want to know if you found it and where!*

Summer Snacking

In the summertime kids get school off. Suddenly you have all this extra time to waste! What do you usually end up doing... heading for the pantry to snack on something. For PKU'ers it's a little harder to join in with this summer ritual. We have to count our PHE equivalents for the day, and snacking sure doesn't help. Here are a couple ideas for both PKU and non-PKU people to avoid snacking a lot during the summer:

1. Have a lot of fruits and vegetables in the house. This doesn't necessarily help you stop snacking... but you might as well be snacking on something healthy if you need to snack. My favorites are apples, strawberries (especially fresh), watermelon, and carrots.

2. This one is for PKU people especially. Keep PKU foods that are lower in PHE so you don't go over your limit because of snacking. I like Cambrooke Foods a lot, and you sometimes can find lower foods in grocery or health food stores (lemon pudding, onion rings, low-pro pretzels...)

3. Drink plenty of water. In the summer where I live it can get pretty hot. Chances are your just thirsty.

4. Go out and do something! Sitting around the house will make the forbidden pantry a temptation. If you go outside and have adventures, you won't even be thinking about snacks.

Snacking can be okay when your actually hungry. But eating when your bored? Why? That prevents you from getting yourself "un-bored" which is the original problem after all. It's summer you should be outside basking in the glory of the sunshine. Go plant a garden! Trust me it'll be worth it and in the fall you'll have lots of good healthy food to snack on.

Many Apologies

Many apologies to all! I have been a procrastinator and it gets worse as I keep putting it off. So to make up for it this post will (hopefully) be long. :)

Bettermilk- My thoughts- My observations- and my Choice

Day 1:

• For breakfast I made the Island Smoothie recipe they had. Being the smoothie queen I did change it slightly though: I doubled the soda added water, and 1/2 a banana. It probably was the best smoothie I've ever had! I can't taste the soda which is fine by me. But it was super tasty.
• For lunch I made mashed potatoes with it. It turned out kind of gray... and I didn't like the taste. In fact I couldn't bring myself to eat it all. :P My dad says it tastes like real mashed potatoes but I've decided I don't like the taste of "real" mashed potatoes. Bring my water made any day! (this was a recipe I tried on my own)

Day 2:

• I used it as a creamer for cereal in the morning. Sugary cereal + sugary creamer= too much sugar. Again a recipe I tried on my own! Of course I don't like my normal formula as a creamer either. They use sugar to mask the bitter taste.
  
• For an after-school snack I froze an Orangsicle using their recipe. It was good! A little lumpy maybe but that was my fault being in a hurry to get to school. At the end it had a bit of an aftertaste, but while I had it I loved it. Why does their recipes work and mine don't??

Day 3:

• I finally made it as a normal drink according to the instructions. It looks white and milky... but it tastes kind of acidic. I don't know I don't like it. And since that's the way I'd have it 99% of the time, I don't think I want to change!

After thoughts: It was okay in their recipes, obviously they know better than me what it tastes good with. But the milk itself was kind of icky. You can try it yourself and see but that's my opinion.

I decided against downloading pics... just because it's kind of hard for a person who's not tech savvy like me... oh well. See you later this week for another post. ;)

Better Millk 3-Day Challenge

Today I received a surprise in the mail. A package labeled Cambrooke Foods (which is a PKU food company). Inside it contained: instructions on how I begin the challenge, recipes for the product, a pamphlet labeled The GMP Revolution, and 6 packets of Camino Pro Bettermilk. Bettermilk is a new formula they're promoting. I looked at booth they had at Camp PHEver last summer, and it looked pretty interesting. It's high in good protein but is relatively low in PHE. (1.5 equivalents for each packet) The challenge is to try their product for 3 days, 2 packets a day. But the hard part is I have to use 5 of them in a recipe, then I can drink the last one. After I'm done I fill out a survey for their research. It sounds cool, and I'm eager to get started. Don't know when I'm going to get started but it will be relatively soon. When I drank a sample of the bettermilk it tasted pretty good. The one major downer for me right now is how much PHE allowance it takes up. Don't know what I'm expecting at this point but the recipes look awesome. (They even have one for ice cream... possibly my favorite dessert in the world!) The pictures above are of the box and it's contents. The one on bottom are the packets which are rather large in size, they contain 15g each. I'll post about the results after I complete it. :) And post the recipes along with pictures of how it turned out!!!

The Many Faces of Hungry

Yesterday while mowing the lawn I had sudden inspiration. I had been feeling hungry and my stomach was protesting the wait. When I realized... I wasn't hungry for food! I was hungry for my formula! As I kept mowing I kept thinking about it. I decided that there were 3 different types of hungry.

1. There's when you're really hungry for food. You'll eat anything! Even yourself if you could!

2. There's when your body is hungry for nutrients that it's lacking! (For PKU it's when you are hungry for formula)

3. And then there's when your actually thirsty, but your body feels like it's hungry.

There could be more but these are the ones I came up with.

With other news I thought I'd like to hear what you would like to know. If you leave a question (any question) as a comment I will answer it as truthfully as I can. Only rule: It has to do with PKU in some way. Okay? I know it's a short post... more like a thought to be honest but next week I'll come up with something longer. ;) See you next week!

Phenylalaine Breakdown

I am a swimmer. I am on my school's swim team and I love the water. It's a great way for me to get exercise too. Everyone needs to exercise! It's interesting though because when PKU'ers exercise they can actually break down the Protein (Phenylalanine) faster. That's because your working hard and using energy. The process has to go faster to keep up with the demand. If you exercise constantly then you can actually keep it going at the faster rate. That allows the PKU'er to consume more PHE. So with my swimming, I exercise a lot. In the mornings we have a land workout and after school we swim. I found myself hungry all the time. (Which is normal in every swimmer.) I got boosted from 18 equivalents to 20, and my formula amount rocketed. I needed more vitamins and nutrients. I also needed more PHE to keep up with the process.

Now I have Classic PKU (the most severe kind). To me have that PHE increase opened my eyes to the world of Physical Fitness. Every PKU would like to be able to have a little more PHE. With regular exercise it's possible. There are so many types of exercising out there. You could: Run, swim, dance, play soccer, basketball, football, tennis, do yoga, gymnastics, lift weights, etc. It goes on and on! There is something out there for everyone, all you have to do is find it? How do you find it? You try everything until you find what you want.

I found swimming. Arguably the best sport for your body. It helps my break down system go faster and lowers my PHE level so I can eat more. Any sport can do the same. Besides exercise is fun!

The Formula Wars

I love my formula. It tastes good, it goes well in smoothies, and somewhere out there is a recipe to turn it into ice cream. (If anyone has the recipe for Phenylade vanilla ice cream please share it as a comment please.) But there is one thing I hate about it... I hate adjusting to it when they change its build up. Whenever I see a sticker saying Now With:---------------------- I think. Uh-oh. I've had some pretty rotten experiences with it too. When I was younger I had a different formula non-flavored, it was okay I drank it. I was 9'ish when they changed the flavor completely by adding nutrients. That's when the struggle began. I was small so I didn't really truly understand the importance of Formula and got rid of it however I could. We changed formulas a couple times and i tried a lot of different types. Before I found Phenylade Vanilla. Since then it's changed 2x but I've adjusted to both by forcing myself to drink it for a couple days. After a while I think it tastes even better than the old formula! But those first couple of days are nasty. The last time I mistook the new taste as leftover soap from washing it! (That was Wednesday.) It tastes okay now. I'm used to it. And really it wasn't that drastic of a change as the first time with this formula.

Another change that usually happens with Formula happens every months or so... a new prescription. Because PKU Formula is a nutrient supplement and they want to make sure you get the right amount of everything. It's easier to adjust to, but recently my prescription got changed as well. Now I have 2 packets Phenylade 60, 160 grams Phenylade. It tastes more watery than before, but on the upside I can drink it faster!

Oh another thing about formula. I love putting it and making it into other things such as a smoothie. If anyone has some really good recipes for Phenylade Vanilla just comment them underneath! Thanks!

Camp for All and All for Camp!

Sorry about the procrastination of this post. I was studying my brains out for my AP Psychology test which I took today. Changed the layout again, you may stop reading this for 10 seconds to admire it. ;) 1,2,3,4,5,6,7,8,9,10. Back to reading!

So as the weather is FINALLY (cross your fingers, knock on wood) turning warm my thoughts head back to the idea... hope... dream of a Camp for PKU'ers in Utah. There are several camps all over the US that host kids with PKU for a week full of fun, friends (with PKU), and food that they can eat. Every other year I myself head to Camp PHEver in Texas (Plane tickets are costly.) But it's a load of fun. My personal favorite things:

1. The food- At Camp PHEver they have chefs volunteer to cook our food. It always turns out amazing! They cook foods I didn't even know had a PKU version!!!
   
2. Friends- I have plenty of friends here in Utah. But PKU friends in Utah?? I have one or two I haven't seen for years. When I go to camp I make SO many friends! All my age! It's amazing! Sometimes though it seems as if EVERYONE with PKU moved to Texas though, because that's where the bulk of them live.
3. Fun- At Camp For All (where Camp PHEver is hosted) they go all out. High ropes course, horseback riding, dances, cook offs, the works. It's so much fun to go to an actual camp, and do what other kids do at summer camp without having to worry constantly about food.
   

Now I love Camp PHEver but... I have a dream that someday Utah will have it's own "Camp PHEver" with a different name of course. But the idea being the same: make friends, learn about your diet, have a load of fun. Having a Camp in Utah would benefit the several states that come to our clinic as well as other Western States! (Now I'm sounding like a persuasive essay.) Think of it: a nice cabin campsite in the sunshine next to real mountains. Utah is an IDEAL spot for a camp. Roasting Marshmallows, playing games, having cook offs... sounds like a perfect camping trip to me.

The Drama of Blood Tests

Every month PKU'ers are supposed to get a blood test done. It's unpleasant but it needs to get done. There are 2 ways to do this. Finger pricks or Arm shots. Which one is better? For me I prefer Arm shots. I don't bleed in my fingers, and usually it takes multiple pricks to fill the 2 circles they told us is bare minimum. Then it turns out the sample was soiled in some way... every time. So I prefer a clean blood shot in the arm.

This is abnormal. According to my new doctor every PKU'er in the clinic does finger pricks, so why can't I? For several days I have been thinking about this. With the new lancets they have all you need to do is place it in the right position and push in. A little needle comes and goes; you hardly even see it. In my daydreams and nightmares it's a stabbing motion. Can I really stab myself? Even if it's in the finger?

I know that finger pricks are a ton cheaper. I can do them at home. But... if the sample is spoiled then I have really sore fingers for nothing.

The doctor's at my clinic are trying to force me to finger prick myself. There is no way to avoid it anymore. At this stage of life I need to have consistent tests taken because my brain is growing right now. If I don't I will get brain damage. I simply have too many plans in life to get brain damage. So I will try to do it even if it means: having sore fingers continually. It's going to be hard to get over my fears. I realize I do fear those lancets they have right now but we all need to do things we don't want to do. Even when they can cause a lot of pain.

I don't mean to sound self-righteous or heroic. I feel very the opposite. It's just one piece of the baggage that comes with PKU... one I've been avoiding for a long time. It's time to get over my fears and prick myself... and prick myself... and prick myself. Hopefully I'll get a clean sample someday.

New Favorite Recipe!

I just got back from a friend's house and soon I need to unpack, then repack. At noon I'll be off again. But before I go at my friend's house we tried this really good recipe that turned out great. It's pretty easy, so here we go:

Ingredients:

• Sliced veggies (we used potatoes, asparagus, sweet potatoes, onions,and other random veggies)
• A pan
• Pam/ or some other nonstick spray
• 1/8 cup olive oil
• Garlic Salt
• Salt
• Non salt seasoning

What you do:

1. Preheat the oven to 400 degrees
   
2. Spray the nonstick spray on the pan/sheet
3. Lay out the veggies
4. Drizzle the olive oil over the veggies
5. Then season it (use very little salt, the garlic salt should take care of it.)
6. Cook it in the oven until all the veggies are soft (about 10 minutes... sorry if I'm off)

That's it!

The fun thing about the friend I stayed with is that she's vegetarian. When I stay at her house it's not just "potatoes and salad" no we eat a variety of foods. It's nice that her family tried to learn what I could and couldn't have. But it's also good if you know it yourself. Well I better go do what I'm supposed to be doing... :) I'll see you next week!

Zupa Pictures

My salad is the one on bottom, my sister's in in the middle, and a cup is on top.

Salad Paradise!

First off did you notice I changed my layout completely? Because I did. I like it a lot, and am currently thinking about changing my background every other month. There are a lot of cool backgrounds on Blogger.

Next item of business: My first (!) restaurant review! (Sort of... in an unprofessional they didn't know I was going to blog about them kind of way.)

A little while ago, probably a couple weeks ago my mom, sister, sister's friend, and I went to a cool restaurant called Zupas. It's this salad, sandwich, soup restaurant. When I go to restaurants most of the time I get a salad. It's what I can have, a lot of the time it's the only thing I can have. Zupas had this nice item on their menu called "A Create Your Own Salad". They let you choose everything for the salad! The lettuce type, the dressing, the toppings! I chose a green mix of lettuce, poppy seed dressing, and 6 toppings: olives, strawberries, cranberries, diced apple, pineapple, and avocado. They had a chose of meat or tofu but I chose not to. Without meat you can actually get 8 toppings! I couldn't find any others I wanted on this salad though. Which is kind of rare because I usually have more toppings than lettuce on my salad if i can help it. They gave each person a chocolate covered strawberry with our orders!!!! After finding a booth we took our cups and went to the soda counter. They had a normal soda fountain but Zupa's also had a bunch of flavorings! I filled my cup up with sprite then added raspberry flavoring... yum! (I also learned right about here that a little bit of flavoring goes a long way :) ) This restaurant was PKU heaven for me. Everything was delicious,and they make the salad in front of you while making it look advertisement worthy. I have some pics to prove it too. I would tell you what everyone else ordered but then this post would get boring. Let's just say everyone (PKU'er or not) was satisfied. I give this restaurant a 8 on the PKU Food Friendly Scale. (I took away 2 points because besides the create your own salad there was maybe 1 other thing I could have.)

Now I'm going to have a fantastic Spring Break! I suggest you do too (that is if you have Spring Break if you don't have a good weekend) ! I'll post a little about it in a not going to reveal intimate details on the internet kind of way ;) ! Bye!

Sleeping Angels

Right now I'm babysitting. The house is quiet as the children are asleep. I've had difficult jobs before; this one was from hard. The kids were so good and everything went smoothly. I don't think I had a single problem! We played games and dressed up. They showed me their secret club and we had a mini dancing party. The most creative part was when I had them get on their movie star clothes (which turned out to be more like princess dresses and tiaras). I went downstairs and closed all the blinds, popped popcorn, and laid out a blanket for them to picnic on. We pretended they were famous movie stars attending the premiere of "Kung Fu Panda". Then it was bedtime. I don't think I've EVER had kids go to bed that easily ever before! I wonder... will it be this much fun when I'm a mom? I know there will be hard days. But will there be days just like this one? Full of fun and creativity, laughter and smiles? I know this blog is about PKU but I'm getting there I promise. Then there's the question. Will my kids have PKU? It is genetic after all. It really depends on my husband's DNA I guess. If he doesn't have PKU and isn't a carrier the stats say all my kids will be carriers but none will have PKU themselves. If he IS a carrier then they say there's a 50% chance they'll have PKU, & a 50% chance they'll just be carriers. If he has PKU then... let's just say it'll be hard to get insurance to help us pay the medical bills. If they have PKU what trials will they go through. Will kids make fun of them? (I never was made fun of but who knows what may happen?) Will they feel left out? Or will they realize how special they are and how PKU is a lifestyle that makes them unique. Will they stay on their diet? What will tempt them to stray? I want to have a family someday. I have so many great ideas I've thought of and collected over the years. Things to do, how to teach them certain things, and things like that. I imagine having little kids who won't finish their food will be a temptation to me. Maybe I should include a dog in my daydreams (?) to eat the scraps. Anyways... kids. In a dark, silent house when you peek in their rooms. Their faces display peace, innocence, and they look like angels. That is until they're awake... when the real fun begins. ;)

A Letter of Hope

For my Health Class we had to do some act of service to the Health community (it was last year). I chose to help the PKU community. I did an assortment of things: collect coupons, make phone calls, lot of diferent things. But my favorite was probably writing this one letter to new parents of a PKU kid. I still have it. It's part of the new gift packages they are giving to new parents of a PKU'er. When parents first hear the word Phenylketonuria it's like the world is falling down on them. I know. But this letter was meant to give them hope. To show them someone with PKU can have a typical life full of adventure and fun. They can function and live. Funny thing... this blog was made to show the world the very same thing. Guess it impacted me more than I knew. Anyways I wanted to post this letter because it's very special to me. It's my contribution to PKU. I like to think it helps people, and that people are actually reading it this moment. Here it is:

Dear new parents,

Phenylketonuria, a genetic disorder in which the diagnosed does not process the “essential” amino acids called phenylalanine. It happens to one baby in 10,000. It’s rare enough that you rarely have another person with it in your school. How do I know all of this if it’s so rare? I was diagnosed with “classic PKU” 2 weeks after my birth. Classic PKU is when the enzyme that’s supposed to break down the phenylalanine is nearly too completely deficient. I am lucky though; my sister was diagnosed with classic PKU as well, I am healthier than other high school students, and I have supporting parents who guide through life. As you have just found out your child has PKU, I just want you to know two things: your child can have a healthy, normal, happy life; and that your support is needed.

Every morning I wake up early for swimming workouts- I’m on my school’s swim team- I work hard and by the time work outs are over I’m starving. So I quickly get dressed into school clothes and hurry to the cafeteria. I eat the breakfast I brought from home (Working out on an empty stomach burns more calories), usually it’s fruit or a slice of toast made from PKU bread. Once done eating I talk to my friends, who have just arrived, until the school bell rings. Not to brag or anything but I do well at school. I have A’s in all my subjects except math. At lunch I eat the lunch I made myself from home. It’s usually fruit and vegetables. But sometimes it includes a sandwich or some cookies. I have swimming every other day after school but afterwards I start on homework. When it’s dinnertime I’ll whip up something simple like a baked potatoes, some scrambled eggs (PKU version), French fries; all depending on how much PHE I have left.

I weigh everything I eat and try to write it down in a diet record. Once a month they need a blood test from me, so they can examine where I’m at. It I need more PHE or less, whether I need more “milk” or less. It’s all a balancing act. (On the “milk” that’s what I call the medical drink they give me to drink to replace my calcium and other vitamin levels.) Every six months I visit the doctors at Primary Children’s and get a checkup. They work on Mondays so I miss school. Those are some of the bigger differences between me and other kids. It’s not that hard.

I have had sleepovers with friends at their house, played at their house; I’ve had dinner with their families. I just eat what I can have. I bring food to parties if I know I can’t have what their eating, nobody cares. I’m an average American girl. Who loves to swim, write, read, dance, play violin and piano, and who likes horseback riding. I am in -- grade and loving high school. I dislike math and heights. I am a typical teenage girl. With a little loving support, and understanding your new baby can have a wonderful, successful future. Phenylketonuria isn’t a death sentence; it’s a lifestyle.

With Hope,

Cassandra Baggaley

P.S. A lot of who I am today is because my parents who love me, and I want to say thank you to them.

(Remember this was from last year)

Food and Dates

Prom weekend was last weekend. I went with a friend and his cousin + his girlfriend. It was a lot of fun. :) Going on dates (especially dinner dates) can be really hard for someone with PKU. You only have so many options. you can either:
1. Bring your own food
2. Eat before
3. Try to see if there's anything you can have and order that /or/ with this case order something specially made.
4. Bring a substitute and see if they'll cook it there

There is good and bad about each of these. You want to make a good impression on a date right?? Some restaurant won't let you bring your own food. Eating before can lead the boy to think you don't eat or your trying to impress him by starving yourself. You might not finding anything you can have on the menu and they won't exclude a couple ingredients. And nowadays most restaurants won't let you cook your substitute. Personally for Prom I did two different things. At lunch on our day date I brought my own food. The boys had each bought food for their dates and I told mine that I could bring my own so he wouldn't have to worry about that. (He was a little disorganized.) Then at dinner we went to Olive Garden. Luckily I found something I could have with little excluding of ingredients. It worked out and I didn't draw any extra attention to myself in the group. I didn't want the whole date to be about my diet, I wanted it to be like a ordinary Prom date that everybody has. (I know that normal is a dishwater setting and that I shouldn't be embarrassed about my diet... but I'm not!) I'm not embarrassed. I just get tired of telling people about it everywhere I go and hog the conversation trying to explain while other people get mad at me for hogging the conversation. Then the best part is when the people who asked about my diet just stop listening and suddenly don't care! They ASKED! It's not like I said, "Hey I have a medical condition and I'm going to tell you ALL about it!" Sorry I'm a little frustrated right now. But basically with dating with PKU; I try not to make a big deal out of it and make it work. Whatever is easiest is the way I try to take. I'll blog in you later. -C.

Happy PKU Awareness Month!!!

Yes my friends it is National PKU Awareness Month!!! Time to go out and tell the whole world about Phenylketonuria. Lately I've been noticing that often people who don't really know much about my diet will ask, "Can you have this.?" "Are you allergic to that?" (It's easier to say I'm allergic to something than go into detail about my diet to every person I meet.) Technically there's no can have/ can't have list. It's more of a matter of counting. When a person is on a calorie diet they count how many calories they have consumed and what they have left. Diabetics check their blood before every meal to see how much sugar they are allowed to have at that meal to balance it out. It's the same for Phenylketonurics and phenylalanine. I have to count how much I have eaten and how much I have left. If I have a low PHE (Phenylalanine) day then I can have a higher food like: a doughnut, a cookie, crackers, chips. Every Phenylketonuric has a different limit. It changes all the time too, depending on our blood tests. I personally can have 24 equivalents a day. I have Classical PKU which is the most severe degree of PKU there is. Other people with PKU I've met can have a lot more than that. My sister though can have 18 equivalents a day. I used to be that as well but, because I am on the swim team I need to consume more Phenylalanine than I used to. But I'll get on to exercising and PKU later.

Remember it's National PKU Awareness Month!!! Do something to tell the world about Phenylketonuria! Thanks for reading and good bye.

Your Faithful Blogger, Cassandra Baggaley

POWER MILK to the rescue!

So I should tell a little more about me... and PKU. I have PKU myself (if you haven't figured that out by now) and have had it since birth. I am on my high school's swim team, I just tried out for Madrigals and Accapella choirs, and I enjoy reading, writing, stuff like that. I'm not going to tell you too much though because this site isn't about me. It's about my diet and how a teenager with this diet can be happy. How I live with it and how my family lives with it. My sister also has PKU sometime I'll have her write a post but for now it's me.

Now, about the pictures on top... Because PKUers (Phenylkenylnuria in case you forgot) can't eat a lot of meat or dairy we find it hard to get certain nutrients that everybody needs. For example calcium is found in milk, which is a dairy. So we have to drink a formula that gives us these nutrients. There are lots of nicknames for our formula: "power-milk", "milk", "medicine", "formula", etc... I used to call it my POWER MILK! Now, I tend to call mine my formula. I have to have 200 grams of Phenylade Essential and 1 packet Phenylade 60. Both are a vanilla flavored powder that I mix with water in a water bottle. There's more than just vanilla flavored, there's: chocolate, orange cream, and unflavored. That's just 1 brand too! It may seem a bit odd but there are actually quite a few brands of formula out there. So the picture on the left is my formula containers.

The picture on the right is not formula. It's a smoothie I made; I took the ACT test on Tuesday. Everyone knows to have a good breakfast on the day of the test. Teachers tell you to eat protein; but what are PKUers supposed to eat if we can't eat protein, and we still want a good breakfast for the test? I made smoothies. :) It was a great breakfast that lasted me the whole test. I threw some oranges, banana, dairy free creamer (substitute for milk), and shredded coconut into my dad's amazing blender. Then alternated the dial between smoothie, and milkshake. Then last second I threw my formula powder in. It blended just fine and I couldn't taste it (which always is my biggest worry when I use it to cook).

Oh and before I go I wanted to tell you the third most heard reaction to my diet, "I couldn't do it I LOVE meat!!!"

Signing off.

Your amazingly awesome writer Cassandra. ;)

Hello to you too!

Reasons why I started this blog:

1. To alert the world about Pheynlketonuria (noble huh?)
2. To vent out my feelings about having PKU (or Phenyketonuria)
3. To find other people with PKU (In Utah especially) become friends with them! :)
4. To describe the life of a typical PKU teenager whose on her diet!
   

(I probably could list more.)


Okay venting my feelings wasn't the best choice of words. I'm okay with PKU, I like it most of the time. It's EVERYONE ELSE that has a problem with it. 2 reactions I get the most when I tell people about my PKU.

1. I'm SOOOOOOOO sorry!!!! (Like its the end of the world if I can't eat meat!)
2. Oh well this (insert food name here) is SOOOOO good! I'm sorry you can't have it!

Wait! I got ahead of myself. Most people don't even know what PKU is. Well... the medical dictionary definition is:

Phenylketonuria (PKU) can be defined as a rare metabolic disorder caused by a deficiency in the production of the hepatic (liver) enzyme phenylalanine hydroxylase (PAH). PKU is the most serious form of a class of diseases referred to as "hyperphenylalaninemia," all of which involve above normal (elevated) levels of phenylalanine in the blood. The primary symptom of untreated PKU, mental retardation, is the result of consuming foods that contain the amino acid phenylalanine, which is toxic to brain tissue.

That's a lot of words so to put it simply PKU is when a child is born with a metabolic disorder where they don't have the enzyme to break down phenylalanine into tyrosine. We have to eat less phenylaline because of it. Which means no meats, no dairy, and very little wheat. Basically we survive on fruits and vegetables. (I've never seen an obese PKU person)

Well that's all for now! I hope you'll become fans and I hope I accomplish what I set out to do! Blog to you later!