Happy 1st Birthday Blog!

I've been blogging for a year officially now. Well, more off and on blogging but the blog has been up for a year now. It's kind of a weird thought that it was only last year when I decided to "change the world" and put up this blog. I really do hope it's done some good out there, and not just for some reports some kid has to write about a metobolic disease. But some real good.







So let's look at some stats for

Year 1:

Top 5 posts:

1. New favorite Recipe- 131 views
   


2. Happy PKU Awareness Month- 125 views



3. Hello to You Too- 62 views



4. Food & Dates- 39 views



5. A Letter of Hope- 31 views

Top 5 Searches that Find the Blog:

1. People with Phenylketonuria-10
   


2. Pheylketonuria-8


3. PKU Awareness Month-6



4. PKU Baby-6



5. People with PKU-5

Top 5 Countries:

1. United States- 867
   


2. Malaysia-31



3. Russia- 28



4. Canada-22



5. Germany-18

Well, what did you think about the results?? I was really suprised at the number of people who viewed Food & Dates. The country views really intrigue me. To have people from another country reading what I'm typing this very moment... it's a pretty awe-inspiring thought. My Favorite post was The Letter of Hope personally. It's very touching. (And it's one of the posts where I actually got a picture to pop up with it.)

So where am I a year later...? Well, I'm a senior getting all my college stuff ready. Almost done with High School. Last year I didn't really think college could ever be so near. Last year... I was younger. I guess that's the word I was searching for. I've learned a lot about life this past year; and I've grown so much. I wonder what this next year will bring for us.

Anyways... Happy 1st Birthday Blog and May you last long enough to have many more!!!

Got Powermilk?

Sometimes you just need to shake things up. The same-old thing though comfortable gets boring. This includes Powermilk. The other day I was at the grocery store with my mom when she found something that could "shake up" my same-old Powermilk.

Ready?

Got Milk Flavored Straws.

I know what you're thinking. Milk... right? But these straws are lactose and gluten free! Cool right? They have 4 original flavors: vanilla, chocolate, cookies'n cream, and strawberry. They have a lot of other flavors too and are making them all the time. In fact, on their "official website" (just google Got Milk Flavored Straws to find it) they have a place where you can invent a flavor and they'll consider making it!

I don't like changing my milk a lot. I get used to the flavor and whenever it changes it takes forever to get used to. (Plus a lot of forcing myself not to gag.) But these straws are just a "I'm bored of my milk let's shake things up and use a flavor straw today" kind of solution.

My sister doesn't like it with her Powermilk. It doesn't mix well, I guess. But I have Phenylade Essentials Vanilla. Vanilla can mix with anything and become new. I don't know how it mixes with other formulas but I'm betting it'll be okay with Bettermilk... wait. I still have a pack from that demo. :) I'm going to have to try it and see for you guys okay??

Okay. Sorry it took me so long to publish. My internet has been wacky lately and I have a lot of posts in mind right now so you aren't going to have to wait long for the next one. :) See you!

Aminosweet IS Aspartame

So I was just reading a facebook post and I found an very interesting article...

http://healthfreedoms.org/2010/02/15/aspartame-has-been-renamed-and-is-now-being-marketed-as-a-natural-sweetener/

It was on the wall of a PKU group and is very important to PKU'ers! One of the deadly chemicals Aspartame has been renamed and reclassified. It's now being called Animosweet, and is classified as a "Natural Sweetner". BUT IT'S STILL THE SAME THING!!!! PKU'ers CANNOT have it! It was created using aspartic acid and PHENYLALANINE! The same chemical we are not allowed to have.

I'm just warning people because I look on the back of labels for Aspartame not Aminosweet. Without reading this article I would've thought it was a totally different thing. Okay... maybe not. "Amino" does give us a clue. I wonder if they'll still put a warning on the back of their products??? (The PKU warning contains Phenylalanine)

And what is the deal with it being reclassified to "Natural Sweeteners"? It was created in a lab!!! That is NOT natural by any stretch of imagination! What happened to all the evidence that Aspartme is actually unhealthy for everybody not just PKU'ers? Doesn't it hurt everyone's brain? Doesn't it cause cancer?? Why on Earth would you eat it then?? Because it's sweet and isn't sugar?? Just my opinion but I'll take sugar any day of the week.

Aspartme is in sugar free gum. That's the reason why I refuse gum when it's offered. Because Aspartme IS Phenylalanine. It will destroy my brain and my life. I have too much to live for, and having one stick of gum full of Aspartme can ruin that.

So in the immortal words of Willy Wonka (as portrayed by Johnny Depp):
Chewing gum is really gross.
Chewing gum I hate the most!

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. :)