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. :)