Friday, April 20, 2012

History Lesson!

Something a lot of people have asked me is, "When was PKU discovered?" "Is it a newly found condition?" So I have found some history on PKU for everyone. Get on your glasses and get ready to learn. :)

1934 PKU Discovered-
PKU was discovered in 1934, when a doctor in Norway, named Asbjorn Folling, noticed that several mentally retarded patients had a strange odor.  He figured out that it was from something called "phenylacetic acid." The patients' urine also had a very high level of a chemical called "phenylketone." That is how the disease got its name, phenylketon-uria.

1950 The Child Who Never Grew-
Pearl Buck, best known for her Pulitzer-Prize winning The Good Earth, delighted in the birth of her daughter Carol in 1920, and was heartbroken when she failed to develop normally. Buck was unable to discover what was wrong with Carol, who grew up mentally retarded as a result of PKU. She published The Child Who Never Grew in 1950 with the hope that her experience could help others

1951 First Supplement-
In 1951, a German professor, Horst Bickel, developed the first PKU formula. The unflavored protein drink provided many amino acids without Phe. For the first time, PKU patients could get most of the nutrition they needed while keeping Phe levels low.

1958 Simple Test Developed-
Robert Guthrie developed a way to test for high Phe in newborns using a drop of blood. The test was fast, simple and inexpensive, unlike earlier tests.

1966 PKU Newborn Screening-
In 1966, hospitals across the country started using the Guthrie test to screen all infants for PKU. By identifying newborns with PKU at birth and managing care from the beginning, mental retardation could at last be avoided.

2007 First Drug Therapy for PKU-
KUVAN Tablets became the first drug approved for PKU


There is a little history for you.

Until Next Time,
Phe

P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!! 
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG




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If you ever have any question you can email me! lauragoode@hotmail.com

Tuesday, April 17, 2012

Is It Nap Time Yet?

You know that time of day, in the middle of the afternoon when you get sleepy. You think, "I could sure use a nap right now." What do you use to wake yourself up? Some people end up taking naps, others grab a cup of coffee or an energy drink, but someone with PKU grabs their formula.

A lot of people don't understand fully what PKU formula does for the body. Of course, it gives me ( and others with PKU) the daily vitamins and proteins that we need, but what does it help improve? Well, someone with PKU must depend on their formula as much as a caffine addict depends on their coffee.

Someone gets tired when they haven't had enough to eat, well it's because the body uses up all the protein that it has been supplied with. Someone like me, with PKU, can't have protein, so I get tired faster than someone without PKU. When I get really tired I should drink some formula to help my body get everything it needs to operate.

My husband, Chipper, actually noticed that I sleep a lot more than him. I am still tired even after a full night's rest, but that's because for the last few years I haven't had my formula to drink. Because my body didn't have the protein it needed to function, I would end up sleeping a lot. But soon that won't be a problem, since I am getting back on the diet I will have everything on hand that I need to fix that problem when it arises.


On another note, I have one of my favorite snack recipes from when I was little!!

Low Pro Snack Mix

A crunchy munchy "low" snack, very similar to standard "party Mix" in flavor.

1/2 cup(14 grams) Rice Chex Cereal

1/2 cup (14 grams) Corn Chex cereal

3 cups (108 grams) 3/8 inch Low Pro Croutons (recipe to follow soon)

1/3 cup Margarine or Butter

1 T. Worcestershire sauce

1/4 t. salt

1/2 t. chili powder

 

In a 13x9-inch baking pan, mix together cereal and croutons. Melt butter and mix with Worcestershire sauce, salt, and chili powder; pour over cereal and croutons and toss to coat. Spread in pan fairly evenly. Bake at 250 degree F for 45 minutes, stirring several times during baking.


Yield: 4 cups (260grams)


                 Phenylalanine (mg)    Protein (gm)   Calories

Per recipe              156              4.0           1060

Per 1/2 cup serving     20               0.5            132

 

 

 

Enjoy the recipe!!!!

Until next time,
Phe


P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!! 
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG




 Follow Me on Facebook:  http://www.facebook.com/TheDailyStrugglesOfPKU


Follow me on Twitter: Phe_ThePKUGirl


If you ever have any question you can email me! lauragoode@hotmail.com

Tuesday, April 10, 2012

Did You Take Your Vitamins Today?

Any doctor will tell you that every human should be taking a daily vitamin, eating healthy, be getting in a daily exercise. As adults, we get busy, some of us push aside the healthy food for not so healthy. Some of us don't make time for a daily exercise, and others forget to take their vitamins.And some forget all three.Well, that should never happen, especially for people who have disorders, like PKU.

Now, not every one with PKU is prescribed or advised to take extra vitamins. But, I was told by my Metabolic Specialist that it would help me a great deal in my daily activities. Since I live on the coast where the sun is known to make an appearance about once a month, I was told I should take a Vitamin D everyday. Vitamin D is the one you naturally absorb from the sun, it regulates the concentration of calcium and phosphate in the blood stream and promoting the healthy growth and remodeling of bone.

I was, also, told I should be taking Vitamin B12. It's key role is the normal functioning of the brain and nervous system, and for the formation of blood. Since, having too much protein can affect the brain this is a key vitamin. It's important to take a multi vitamin along all the others.

I have noticed since I started this new vitamin regimen, I have so much more energy during the day. I also, have noticed that I am happier (I have no idea if that is in anyway related to the new vitamins, but I thought it should be shared). So far I feel great!!


On another note, I have to confess that I have been procrastinating since I saw my Metabolic Specialist. I just got around to ordering my formula today. I feel bad for doing everything else the doctor told me to do except that, only because that is one of the most important parts of the PKU diet. But now it's ordered.


Before I sign off.... Here is another PKU friendly recipe!





Easy Drop Danishes

2 c. (200g) Cambrooke Foods MixQuick
1/4 c. softened butter or margarine
2 TB. sugar
1/3 c. Rich's Coffee Rich mixed with 1/3 C water
1/4 c. canned pie filling (strawberry, lemon, or cherry)


Glaze:
2/3 C powdered sugar
1/4 tsp. vanilla
1Tbl. warm water

Heat oven to 425 degrees. Lightly coat cookie sheet with cooking spray. Stir MixQuick, margarine, and sugar in medium bowl until crumbly. Stir in Coffee Rich and water until dough forms, beating about 15 strokes. Drop dough by well-rounded tablespoonfuls about 2 inches apart onto cookie sheet. Make a shallow well in center of each with back of spoon or by wetting fingers and smoothing dough; fill with 1-2 tsp. pie filling. Bake about 10 min. or until golden. Mix together glaze ingredients. While warm, drizzle with glaze (or other commercial frosting that has been softened in microwave for 45 seconds). Makes 8 danishes.
per recipe - 50mg PHE, 1.6 g. Protein, Calories is 1695
per danish - 6 mg PHE, 0.2 g Protein, calories 212
You might could do a cream cheese filling with wild berry cream cheese....


I hope you enjoy!!


Until next time,
Phe


P.S. Now is the time of year that the March For Dimes is happening!! Nationwide there are walks being coordinated to provide medical help to babies born premature!! Learn more and Donate Now!! 
http://www.marchforbabies.org/personal_page.asp?pp=4364044&ct=4&w=5545908&u=LauraRG




 Follow Me on Facebook:  http://www.facebook.com/TheDailyStrugglesOfPKU


Follow me on Twitter: Phe_ThePKUGirl


If you ever have any question you can email me! lauragoode@hotmail.com