Happy PKU Awareness Day 2012

First off, HAPPY PKU AWARENESS DAY!!!  And may your PHE levels be ever in your favor!

You would not believe how many page views I've gotten today.  It's a new record.  And I haven't even posted yet!

Okay so how did you celebrate?  I wore ALL blue!  Even when I went swimming today I wore my blue suit with a blue cap and blue goggles.  I also whipped up a PKU Peach Cobbler (you can find the recipe in my post titled: A Recipe Worth Making) and shared with some of my non-PKU friends.  I'm also posting on my PKU blog.  :).

(By the way that 1st line is something my sister and I made up when texting each other Happy PKU Awareness texts.)

At the bottom I'm posting links to a couple of PKU videos that I want to share.  They are really good.  Next week I'll type up my own "PKU Story" so you have something to look forward to. :). Sorry this post is so short it's the week before finals (aka dead week, literally that's what the University calls it!). So I better get back to studying.

Enjoy the videos!  And Happy PKU Awareness Day!

http://www.youtube.com/watch?v=W2ipJAIiBc8&sns=em

http://www.youtube.com/watch?v=3ggP2lnsF70&sns=em

Thanksgiving ABC's

Happy Thanksgiving!  Have you ever made a list for things your grateful for?  Seeing as it's Thanksgiving I'm going to just that:
  
A- Apples (they are my go-to snack when I'm hungry)
B- Bread (The PKU kind is very yummy!)
C- Cats (I have black cat that I love very much!)
D- Dogs (see I'm not exclusive ;)  I have a dog too)
E- Electricity (because really... our society depends on it)
F- Friends and Family (Because they are all amazing people
G- Games (I love playing Board/ Card games)
H- Heel pricks that they give babies at birth (that's how they diagnose PKU and without it I wouldn't be typing this)
I- Ice Cubes (living in a dorm w. no ice and tap water that doesn't get very cold has made me appreciate ice cubes all the more!)
J- Jokes (Life would be a lot duller without them)
K- Kids :)  (I have nothing more to say about that)
L- Libraries (Because at heart I'm really a bookworm)
M- Music (It's fun to listen to, sing to, and dance there)
N- Nature (I love being outside, and it's beautiful)
O- Outdoors (It goes with nature)
P- PKU (a lot of who I am is because I have PKU)
Q- Quilts (Love snuggling under quilts on rainy days.  Especially ones made with love)
R- My Roommate (She's a dear, and we get along just great)
S- Smiles (nothing makes me happier than a returned smile)
T- Toothbrushes and Toothpaste (self-evident)
U- Universities (Specifically the one I go to)
V- Vehicles (They make traveling places a lot easier)
W- Water (Water is the elixir of life... really)
X- Treasure ("X" marks the spot! Haha!)
Y- You (because you take the time to read my blog)
Z- Zero, the number (Because Zero is my hero ;) and without it we couldn't go past 9)

Have a great Thanksgiving!

Life or Death Rituals

Every PKU'er has their own rituals when it comes to Powermilk.  Whether they drink from a specific type of water bottle, or they add something to the mixture, or even what times they drink it.

If their ritual is messed up in any sort of way, then they feel off all day.  At least I do.

Today one of my rituals was thrown off.  So was my day.   

What are my rituals?  It gets a bit detailed...

My ritual includes:

• How much medicine I put in my water bottle at one time.
• How much water I mix with it.
• What sort of container I use.
• When I drink it.

If one of these elements are thrown off...  okay.  Well it depends on which one is thrown off.  When is loose factor there. I don't drink my formula at the same time according to the minute.  It's more like "after breakfast".
If any of the other elements are thrown off.  It feels like a life or death matter.

Today I lost my last water bottle on the bus.  I had 2 but the other one was stolen  (I left it where I had been sitting and came back for it 5 minutes later to find it missing.).  So that was my last one.  My roommate lent me her water bottle but it's made differently... and I have to force myself to drink my medicine, because it's not what I'm used to.  (Fun Fact: It actually tastes different in different cups.)  So now I have to go and buy a new one, as soon as I can get to the store.

I know.  I know.  Stop complaining, this is a blog about PKU not a diary about you!  I'm sorry I'm off my game.  Like I said.  If the ritual is messed up... my day is messed up.

I know other PKU'ers who have other rituals.  I know a girl who adds strawberry syrup to her milk, and another who adds Sunny-D.  Everyone has their assigned "Powermilk" cups, and those few brave souls who drink out of a cup I applaud.  So it's not just me.  And I knwo they feel the same way I do about their rituals.  
Do any of you have rituals like that?  Where if you don't do it or it changes slightly you're whole day is... off?  (I dare all you to answer me back- and I know your reading this because I can see the stats.)

Thanks for reading this.  Thanks for finishing this.  Thanks for visiting my blog at all! :)  Have a good day!    

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... :)