New Holiday Declared! ...Sorta.

Remember that post PKU Awareness Month? 

Well, there have been many different days that people would call "PKU Awareness Day".

I merely picked one of those days and made it my PKU Awareness Day.  Except I made it a month.  Because finding something to do to celebrate PKU everyday that month was fun!  It was something fun to do. 

Now Congress has officially made a PKU Awareness Day. Seriously.   

It's on December 3rd.

So make sure you celebrate it!

On npkua.org they have a list of 10 ways to celebrate it, and bring awareness to the world.  You can check those out on the website if you really want to.  A lot of it is "organize a dance-a-thon to raise money for PKU Awareness".  And those ideas are good too.  But I'm going to give you a list of 10 fun, little things you can do: 

1. Since PKU is represented with blue- wear AS MUCH blue as possible!  Maybe spray blue hair coloring in your hair to make it blue too! (Make sure ll wash out)  Or you can go the easy route and wear a blue shirt.
2. Make an ALL PKU meal for your family and /or friends.  :)
3. Pass out PKU Stickers to everyone you meet. (And make sure they wear them!)- or just wear PKU stickers yourself.  I don't know where you'd get stickers... maybe you could make them!
4. If you have PKU you can have fun and experiment with your formula.  (In my case I'd turn it into a smoothie)
5. Make a t-shirt.  Put anything PKU related you want on it.  You can just print out a design on some special paper that allows you to iron on the design.  If done correctly this will last a long time. :)
6. Post fun facts, or pictures about PKU on Facebook, twitter, tumblr... whatever you guys use. 
7. Put up a poster in your window.  Make sure to use blue!  
8. Throw a PKU Party and serve PKU snacks!  
9. Write a song about PKU.  (Or a parody... those work just the same)  I want video footage if you do this one though!
10. Make your dieticians happy keep a diet record for the day and see how you do.  Are you eating too high or too low?  Make adjustments.  :)  Then email your dieticians a thank you note.  They use a lot of chemistry and it's hard. ;)  Or you could just skip to part 2 and email your dietician.

Although many of these ideas are geared towards those with PKU you can celebrate if you don't have PKU.  I'm going all out this year.  I promise!!!  I want to hear about what you guys do for this year's PKU Awareness Day!  Email me pics, comment in the box below, give more great ideas for next year!  Just make sure you celebrate PKU Awareness Day!   

An Extraordinary Find!

My college buddies and I cook a lot.  We do.  And it's fun.

Well, last night we made this treat from a recipe one of my friends got off of Pinterest.

It was really really good.

It was really really easy to make.

and the best part???

It was PKU FRIENDLY!!!

I LOVE finding new PKU friendly recipes!  It really makes my day.  :)

So without much further ado... I pass it on to you: 

  Strawberry Ice Cream

1 banana, sliced and frozen
1 handful of strawberries, frozen
1-2 TBSP Coconut milk
1 TSP Vanilla extract

Place the frozen bananas and strawberries into a food processor.  Start blending then add in the vanilla and coconut milk.  Just enough for it to blend together but not too much, it's supposed to be really thick.  Once it is smooth but still thick scoop it out and you have ice cream!  It doesn't store well in the freezer, and it makes 2-3 servings.

To be honest, we followed the instructions loosely and were fine.  You could make it any flavor, by tossing in that fruit.  We made Peach and strawberry.  :)  You know how much I love ice cream.  I even dedicated a post to my love of it back sometime last year. (it's called Favorite Dessert... or something like that.)  Here's our batch.

How did we do the layers?  Well let me tell you, it was SOOO difficult.  We made one, divided it (we only have 1 blender), then made the other and divided it.  It just naturally layered like that.  Theoretically you could make a whole rainbow, as long as you had a fruit for each color of the rainbow.

Now I can see it in your eye, you want some.  You have the recipe now go and make it for yourself!  Have fun with it!  

P.S.  When you change the flavor by adding different fruits keep the banana.  It works as the base for the ice cream.  :)

A Recipe Worth Making

I have an incredible younger sister who loves to cook.  She is really good at it and when ever I am at home, she likes to cook me food.  And I love to eat it.  It's a good compromise I think. :)

Recently my sister and my mom decided to take a regular recipe and change it so it's PKU.  They chose Peach Cobbler. (Which is one of my favorite desserts ever! And has many good memories attached to it!)  It turned out really nicely apparently- because it was gone by the time I came home.

Luckily they had the recipe written down.  So I took it back to college with me and tried it myself.  (See picture on right- yeah that's mine.)  Here's the recipe:

You need:

• 1 stick butter
• 4-5 cups Sliced and Peeled Peaches (if you use fresh peaches that equals 3-4 peaches)
• 1/2 cup Sugar
• 3/4 cup Water
• 1 cup Some kind of Low Pro Milk (rice milk/ coconut milk...)- I used Rice Milk for mine
• 1 cup Rice Flour
• 1 tsp Baking Powder
• 1/2 tsp Salt
• 3/4 cup Sugar (not a mistake you'll see why I put sugar 2x in a moment)

Instructions:

• Melt butter in 9x11 @ 350 degrees
• In a large bowl mix peaches, 1/2 cup sugar, and water then leave the mixture until the end
• In a different large bowl mix rest of ingredients (creamer, rice flour, baking powder, salt, and 3/4 cup sugar) Until all ingredients are blended well!!!
• Pour batter over butter (don't stir here!)
• Spoon peach mixture on top
• Bake @ 350 for 40-50 minutes

(I don't have the equivalents for this recipe right now but if you want I can try to get them for you)

It's really tasty!  :-D    

It All Started With An Email...

Have you ever heard of PEG-PAL?  Probably not.  I vaguely knew about it myself... until today.

You see, occasionally I get emails from this PKU Group in my state.  Today I received one of theses emails from them and discovered some very interesting news about PEG-PAL.  I didn't really know anything about it so I did some research.   

PEG-PAL is 2 different things really.

There's PAL which is Phenylalanine ammonia lyase (PAL).  It's a protein (enzyme) found in plants, it converts L-phenylalanine to trans-cinnamic acid and ammonia.  

Then there's PEG (aka polyethylene glycol) which is a water soluble compound that is non-toxic and can be safely cleared from the body. 

They use the PEG to help get the PAL into the body, because PAL is this unknown substance that your immune system wants to get rid of.  The PEG hides the PAL from your immune system.

The PAL is a stable enzyme.  They put the PAL into the body and it metabolizes Phe.  The PAL basically takes over for the PAH (which is the enzyme PKU'ers have troubles with and converts the extra Phenylalanine into trans-cinnamic acid and ammonia.  The body then can easily get rid of the trans-cinnamic acid and there isn't enough ammonia to do much damage.    

How do you get the PEG-PAL into your body?  Injections.  Yuck.  But how often you would take need to take it depends on the person.  From everyday to once a week.

So now you know what I know about PEG-PAL, here's the news: PEG-PAL is going into Phase 3 testing in 2013.  Phase 3 testing is basically the big-group testing.  It's already been proven to work on a wide range of individuals (including lots of Classical PKU'ers).  Some people have been taking it for 2 years now as part of the long term effects testing.

Now here are the reported side effects (I'm going to list them clearly with normal print unlike medication commercials): rashes, and sore joints.

Seriously.  That's it.  Everyone had sore joints for the first few weeks of taking the drug.  But as the body became used to it, the sore joints wasn't there anymore.  People who got rashes reacted to the PEG.  And apparently if your taking any medicine with PEG in it already, you can't use PEG-PAL.

The benefits?  You basically can go off diet.  You have enzymes breaking down the excess Phe.  There is no build up, so a controlled diet is no longer needed.
    
I've tried to be non biased in my research so far... but now it's time for me to share my opinion.  We're getting closer.  The PEG-PAL is not a perfect solution.  Who wants to have injections everyday?  But it's better than KUVAN by a long shot.  I like the theory behind it.  I really do.  It makes sense to me.  There's still some things that need to be fixed during this next phase, but modern medical science has been making leaps forward to a solution.  I might even try it... Not now.  I'm a poor college student with no car, and lives far from the clinic.  But if I can get over the injections idea... I might think about it.  :)

And to think that this super long post started with an email I got today... :)        

The Powermilk Problem

There is a problem that has been on my mind for a while now.  Don't worry its not life-threatening.
It's just... I need a new name for my Powermilk.

Don't laugh at me, it's a real-life problem.

I call it Powermilk, in the blog, because that's what I introduced it as.  I kept calling it that to remain consistent.  Powermilk is kinda... I don't know... Do you remember that childhood nickname your parents called you growing up but whenever they would call you it in public years later you'd get the weirdest looks?  That's what "Powermilk" is the nickname that earns you weird looks.  

So my sister and I compiled a list of names we have used on occasion or names that people have suggested.  

-My medicine
-Steriods
-Shake
-Phenylade 
- Incomplete Protein Powder
-Milk
-Magic milk
-Formula
-Drink

None of them "stick".  I grew up with Powermilk, but I was teased (not badly, my childhood was a happy one) back in elementary school.  So I started calling it my formula, but people kept mentioning   how it made them think of baby formula.  :-/.  

My roommate calls my Powermilk, my "magic milk".  And my sister calls her Powermilk... Steriods.

What would you/ do you call it?  I want to know.  Who knows, Maybe one of your ideas will stick.

A Cup Half Full

A long time ago I agreed to share my PKU pros list.  Well, I'm finally getting around to it!  I know there will be things I haven't thought of so if anyone thinks of any just comment below and we'll add it.  :). I'm positive this list will help other PKU'ers who are struggling to look a the bright side.  It helped me.

PKU Pros:

1. You have an army of doctors monitoring your health.  So if you ever have a tumor or a virus they'll catch it pretty early on.

2. You're healthier.  Think about it, have you ever seen an obese PKU'er?  Didn't think so.

3.  You don't have to worry about carbs... Just PHE. ;)

4. You can still live life and interact with people around you.

5. You are really good with scales.  (just in case you wanted to be chemist)

6. You can cook, and more importantly mess with recipes to make food you can have.

7. You always get to bring home lunches, and don't have to deal with the "mystery meat".

8. You learn self-control.

9. You can refuse weird looking foods, blaming it on your diet.

10. You aren't alone.  There are others who have it and understand everything.

I had fun with this list.  I hope it brings a smile to you're face because as I was typing it I was laughing hard.  My roommate probably thinks I'm psycho now.  Sometimes you've just got to laugh at life.  There are serious ones along with the funny ones, so that if you're having a blah day and funny justn't helping... The serious ones will remind you there are some good things about PKU.

Like I said earlier, add to this list.  Have fun with it!  :). See you later!

College HO!

College is even busier than I thought. 

Yes that's right, this blogger is officially a college student. 

It's crazy here.  And living on diet is both harder and easier than it was at home.

Easier Because:

1. I'm doing my own shopping and I can plan what I buy according to what I eat.  
2. I have a bigger selection since everything I buy is PKU-proof.  
3. I find Powermilk an easy snack that gives me energy so I drink it more.

Harder Because:

1. I have to find the time to cook a meal and eat it!
2. I have to find time to make the 1/2 bus ride to the nearest grocery store.
3. This is the biggest one...  It seems everywhere I go they try to feed us.  At every event their serving some type of refreshment (especially ice cream) and more often than not I can't have it.  

I can't plan a snack for EVERY social event.  I just don't have that much money, time, or food for that!  But sometimes (especially with ice cream) it's tempting.  I hate to admit it but it's tempting.  I'm on my own and my parents won't know (unless I post it on my blog like I'm doing right now...)  Luckily I haven't given in. (So you can be assured mom)  And I won't give in.

College is harder and easier than I thought it would be.  I'm living on campus with a kitchen right now.  So I have a place to cook meals.  Some on-campus places don't have kitchens.  They have cafeterias that serve your food.  Once in a while that would be nice... when I don't feel like cooking or I'm too busy to make a lunch.  But the selection for PKU'ers in the Cafeteria is small.  I'd have to have the same things day after day, and that would get annoying fast.

I've heard of people talking to the managers and getting them to store and cook PKU foods for them.  I would just rather have a kitchen.  It seems like less of a hassle.  But it's another idea for those looking for some ideas.

College.  It's crazy.  I still can't believe I'm here.  :)