Low Protein Diet

Some people say the Low Protein Diet, for people with PKU, is a life long diet. The doctors and nutritionists recommend it as a life long diet as well. But is it really that important?? What would happen if someone with PKU went off the diet??

As a child, I grew up thinking that every kid my age were lucky to not have to drink the protein formula that I did. I wasn't envious by any means, but I did look forward to the day that I didn't have to drink it everyday. I mentioned it to one of my nutritionists at one of my appointments, and that was when the speech started. "Diet For Life!!"

Well in the past few years, I have not listened as well as I should have. I hate to admit that I am wrong, but.... I am. I had no idea of the problem that it could cause! I started developing a rash on my arms and neck. It wasn't until recently that I found out that high protein levels can cause eczema.

I, also, found that if someone with PKU were to have been off the diet for awhile, they could experience some hair loss. Nothing extreme, but hair would still be falling out, more than the normal shedding. I haven't experienced this one, if I have I didn't notice.

Some people have a hard time controlling emotions. Something that would normally be annoying could make someone with PKU want to scream in anger. I have noticed some irregular emotions, but nothing close to screaming in anger.

I'm sure there are a lot of other things that are caused by a high level of protein in the blood stream, but this is all I know of at the time. I will keep looking and post if I find any others.

That being said, I have to agree with the doctors and nutritionists. DIET FOR LIFE

Until next time,
Phe

There is a Time for Change

I have been telling you a lot of things about PKU lately. Basically, I am just informing you and not talking about the daily struggles. That is going to change a little bit. This blog is not only to inform and make you aware of PKU, but it is also to help those who have loved ones with it as well.

Having PKU is difficult, but not as difficult as living with someone with PKU. Going grocery shopping for a household that includes someone with PKU is hard when you yourself don't have PKU. You have to think about what is healthy, what everyone likes, and how much protein is in the food you are buying. You have to stay aware of how much food you are purchasing that the one with PKU can actually eat.

The "normal" person making a meal for the household needs to think the same way when cooking. "How much protein is in this?" "How much food did I make that _____ can eat?" It's not easy.

Now I wanted to start doing something new. I have been trying to keep count of my protein intake lately. I'm not doing very well by myself. So, I am going to start putting the amount of protein I ate/drank the day before I write a new blog.

Thank you for everyone reading. Today's blog has been a little scatter-brained.

Until next time,
Phe

Intake: 16 grams

How Often Does it Occur??

I have said before that PKU is not very common. That wasn't the complete truth. It depends on what part of the world you are in. In one country it could be more common due to intermarriage.

United States 1 in 25,000
Ireland 1 in 4,500
France 1 in 13,500
Turkey 1 in 2,600
Scotland 1 in 5,300
Iceland 1 in 8,400
United Kingdom 1 in 14,300
Norway 1 in 14,500

Denmark 1 in 12,000
China 1 in 17,000
Italy 1 in 17,000
Chile 1 in 18,916
Canada 1 in 20,000
Yugoslavia 1 in 25,042
Finland <1 in 100,000
Japan 1 in 125,000

As you can tell, it differs from country to country.  I find it interesting to me how it differs. Looking at all these numbers makes me feel extremely blessed to have been born in the United States, because it's one of the countries that have the low PKU birth rate. But I guess it really doesn't matter considering I was born with it. Anyways, I just wanted to clarify that statement.

Until next time,
Phe

Scales Are Not Our Friends

Friday, I wrote about diets. I wanted to be clear that not all diets are unsafe for someone with PKU. Most of the very effective ones are not, I want to be clear that there are some diets that work great.

Grapefruit Diet
Eat half a grapefruit before each meal. Grapefruits have about 2 grams of protein in them, so it's safe. There are many variations of the diet but it is still safe.

If you think about the amount of diets that are available for someone with PKU, you can understand why the over 2/3 of all people with PKU are obese. Someone with PKU doesn't ingest enough protein to stay full for a long period of time. Potein is what makes you feel full. Since they can't have much protein they don't stay full for long periods of time.

The amount of fatty acids that are ingested by someone with PKU is a lot more than your average person. The PKU formula has a large amount of fatty amino acids which make up proteins. With ingesting that much fat and fatty amino acids, it would be hard to not struggle with your weight.

I can't wait for the day when my PKU won't cause weight and many many more issues.

Until next time,
Phe

Dieting Stinks!!

Have you ever had that moment where you are looking in the mirror and you notice your favorite outfit is fitting a bit snug. You think to yourself, "I need to go on a diet!" Dieting for some people is a very normal and easy (ish) thing. For someone with PKU it is a very hard thing to do.

Other than the low protein diet that all PKU patients should be on, there isn't a safe diet to go on. Most diets are based on PROTEIN, PROTEIN, PROTEIN!! Obviously, that is not an option for someone with PKU. Every diet has something that a person with PKU will have a problem with.

Here are a few examples...

Slim-Fast
Although their Shakes are delicious the contain 10 grams of protein each.
The Snack Bars aren't too bad, with 1 gram of protein, but they aren't really nutritious for you either.
The Meal Bars have 8 grams of protein.
The Shake Mixes are not much different than the shakes, coming in at 10 grams.

Atkins
Snack Bars come in at 8 grams of protein.
Breakfast Bars have 10 grams of protein.
Dessert Bars have 5 grams.
All Purpose Baking Mix has 20 grams.
Pasta has 11 grams.

South Beach Diet
Meal Bars: 12 grams of protein.
Snack Bars: 6 grams of protein.
Breakfast Bars: 9 grams of protein.

As you can see, all diets are based off of high protein levels. There are many more but I figured you wouldn't want to read more, you get the point.

Someone with PKU is already on what is known as the "Low protein diet." They get their protein from a formula, there are many different brands and flavors. They make shakes that have the daily amount of protein already broken down, or missing a piece known as phenylalanine.

There are no real diet options for someone with PKU, the only thing we can do is watch our portion sizes and exercise. That gets very difficult at times.

Until next time,
Phe

A Little More About Me

I haven't posted for a few days, I wasn't exactly sure what I wanted to write about. I realized in my first post I didn't tell you about me, I just told you about PKU. So here is a bit of my story...

My name is Laura, I am 20 years old. I live in North Bend, Or, with my husband of 8 months,Chipper, and our puppy, Peach. We just recently moved back here from Medford, Or. We are so happy to be back around family and friends.

Obviously from my previous posts, I have PKU. I have what's called hyper phenylketonuria, meaning it's the mildest version of PKU. Everything I have posted about affects me in one way or another.

Growing up people would ask me how I could stand not eating steak or hamburgers. They never understood that I didn't and still don't know what I am missing. I don't really care about eating meat, I am more concerned about the health and behavior issues that comes along with PKU. I want to not have to worry about getting pregnant unexpectedly and having to take extra precautions just in case I do.

The purpose for this blog is to spread awareness of PKU, help others who have PKU or knows someone who has it, and to keep track of myself. I want to feel that I am held accountable by my readers for my phe levels and my health.

If you have anything you want me to write about or questions you want me to answer please comment on the most recent blog post. Just let me know and I will do my best to write about it.

Until next time,
Phe

A Cure??

For as long as I can remember, the nutritionists I go to have been taking about a cure for PKU being only 2 or 3 years away. Well, that hasn't happened obviously. But it does give one hope to think about it.

The last time I went to my nutritionist's office (4 years ago), they told me that scientists were working on a pill or tablet that with subside the symptoms of PKU temporarily. I thought that would be great, but once you think about it... It "subsides the symptoms" well that couldn't do much good. That means I could eat all the protein I wanted and it would still affect me internally. The only difference there would be that I wouldn't feel depressed or aggressive.

Recently, I stumbled onto this article online that was dated in 2005. It talked about shots in the liver might cure PKU. The scientists, Dr. Woo and Li Chen, first started with mice that had PKU. They developed a shot that was administered to the liver of each of the mice.


The scientists were able to cure PKU in mice with just three injections. The levels of phenylalanine in the treated mice dropped to a normal range and remained stable thereafter. Their fur color changed from grey to black, that means that the body was producing normal levels of melanin, or pigment, which is under produced in mice and humans with PKU.

This is promising to me, and all others who are affected by PKU. I pray that it is able to be given to humans very very soon.

Until next time,
Phe


http://www.outsourcing-pharma.com/Preclinical-Research/New-gene-therapy-technique-cures-PKU