Category: PKU Photo A Day

PKU Photo A Day

May 4th 2016 #PKUPhotoADay

Posted on by Amanda Horner

2016-05-04 08.55.56

 

May 4th :Low protein foods

Here is a snapshot of some of my favorite low protein foods. This photo includes,  cambrooke bagels , maddys homestyle muffin mix, aproten pasta, cambrooke eggz,My morning breakfast cambrooke eggz omelet!   aproten cookies, my bettermilk formula, apples and plums!

These medically necessary foods make up the majority of the low protein diet. You are required to have a prescription to have access to these foods. You also must be followed by a metabolic clinic and attend regular appointments.    Low protein foods consist of chemically altered and artificial imitation foods. That are made to not have protein in them so therefore are very low in phenylalanine . Unfortunately most are high in carbs and refined sugars. Also high calorie.

There are several companies that specialize in the production of low protein foods.  The most popular is Cambrooke Therapeutics. They have many pre made and frozen foods.

I use to rely heavily on mostly baking mixes and pastas and made a lot of my own food from scratch.  This way I could control what was going into them.

Up until a few years ago, British Columbia Residents paid out of pocket for these medical foods. These foods are very costly. For Example a bag of pasta is 9 dollars. A box of baking mix is 54 dollars. 1 Box ( 1 serving ) of  imitation mac and cheese is 18 dollars, and a bag of rice is 21 dollars.

Thanks to CanPKU , Their team of volunteers including myself and BC Health Minister Terry Lake BC residents now have a low protein food subsidy of 250 dollars a month. We also now order foods from the National Food Distribution Center in Montreal and they have a freezer section so now I have access to the pre made cambrooke foods. The convenience of the low protein foods give me more freedom and time  to focus on other things. I use to bake food once a week on the weekend and make enough to freeze for the week. Now I can grab something from Cambrooke on the go.

My favorite foods are the Cambrooke Eggz, Aproten Pasta, Aproten Biscott cookies, Fruity Banana hot cereals, and the cambrooke pitas, pizza rolls, bagels , tortillas, and mix quick.

I also love the baking mixes by taste connections . I use it to bake perogies and english muffins.

I also frequently bake my own recipes for pizza pockets , pizza , apple strudels, and buns with wheat starch.

I regullary acess low proten recipe sites such as http://www.Cookforlove.org and Cambrooke foods to help make meals more interesting and keep a variety in my diet.

 

 

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Managing the diet, PKU Photo A Day

May 3rd 2016 #PKUPhotoADay

Posted on by Amanda Horner

PKU infographic and facts:

wheel

 

The Diet and Formula are the oldest and most well researched and tested treatments for PKU.

When PKU was first discovered in the late 1960s , treatment started with the amino acid formula.

Secondly it was the low protein diet as the main treatment for PKU.  Patients with PKU where placed on a restricted diet with limited protein.  The less protein in the diet, the less phenylalanine in the blood.

They actually use to think that PKU patients could come off the diet after age 7 as they use to believe the brain stopped developing. Patients who were taken off diet at such a young age, now suffer from delays, developmental and social disabilities. Thoug they are not mentally handicapped. Being taken off diet as children has impacted their ability to be high functioning , maintain relationships, hold steady employment,  impaired reading and writing skills , learning troubles, or struggle with depression and anxiety.  As well as challenges maintaining diet and compliance to diet and  managing lower phe levels.

It was in my generation when scientists finally had enough evidence to prove Diet should be for life. There is no cure for PKU. You do not outgrow it, and your brain never stops developing.

The Low Protein / Low Phe Diet consists of :

Mediabolic amino acid formula

Medically necessary Low protein food products that are artificially made not to have protein or phenylalanine in them.  These foods range from baking mixes, Pastas, pre made frozen foods made specially by Cambrooke foods and more.

Limited amounts of Fruits, vegetables, fats , spreads, oils and spices. Some hard candies and fruit juices are also low in phe.

Foods high in phe or protein such as Meat, Dairy, Fish / Shellfish, Nuts / Seeds, Legumes,  beans, peas , Soy, Tofu,  eggs, grains, and regular pasta must be avoided.  Also higher protein vegetables like corn and potatoes must be limited.

 

 

 

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Low pro food / cooking, Managing the diet, PKU Photo A Day

May 2nd 2016 #PKUphotoaday

Posted on by Amanda Horner

 

2016-05-02 09.40.26

May 2nd 2016
‪#‎pkuphotoaday‬ bottoms up/formula

One of the main treatments of phenylketonuria (pku ) is a metabolic amino acid formula.

It was the first treatment for pku and is essentially a medication. It requires a prescription and dosage is based on body weight.

All of my life I am required to drink this formula 3 times a day
The formula is made up essential amino acids , vitamins , minerals and protein with out the phenylalanine that I am allergic to. My brain and my  body rely heavily on my formula as it is essentially my life support system.

As a child our choices were very limited and my formula was made from potatoes starch . We flavored it with strawberry nestle quick.

Now for the past 3 years I drink this new gmp / whey protein
formula called bettermilk and in flavor it wit Mio water enhancers !
I’m very lucky that I enjoy my formula and have never had issues drinking it. I drink 2 packages in the morning with 16 oz water, 1 package at lunch with 8 oz water, 2 packages at dinner with 16 oz water and each time I pick a different flavor of mio too add. My favorites are the sports , blue and orange!

 

It took me a while to adjust to the different taste and texture of Bettermilk. In fact at first I could not stand it. I switched to it and switched back a few times. But the benefits of GMP and bettermilk made me want to give it another try. It is very good for digestive health and I have always had tummy troubles and struggle with IBS. So it has really helped me.

Many people ask me what it tastes like, I find this a difficult question since I dont have anything to compare it to. So What I can say, is that I love it! It is sort of creamy and is suppose to be an imitation of real milk. It took me a while to adjust to that because it does not have the grittiness of regular PKU Formulas.

So what is GMP?

GMP is a naturally occurring whole protein for the dietary management of PKU . I believe it is made during the process of making cheese . Is the only form of naturally occurring protein that does not contain phenyalaine in a pure form. There is some phenylalaine in bettermilk. Approx. 23 mg per package. So be sure to account for it in your daily intake!

The formula has always been fully funded by each provincial government across Canada.

 

#PKU #phenylketonuria #MPKU #lowproteindiet #dietforlife #PKUAwareness #lowlevels

#Lowphe

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