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. ;)