PKU Diet Information

Question?
Answer:

How long do I have to follow this diet?

In order to stay healthiest, mentally and physically, it is necessary to maintain a low phenylalanine diet and to make the formula a part of your diet for your whole life.

Question?
Answer:

I heard that it doesn't matter if you follow the diet when you're older. Is this true?

The quick answer is, no! When people first discovered that a diet low in phenylalanine prevented problems like mental retardation in babies with PKU, they thought that it was only necessary to follow the diet during childhood. This is because the brain, which can be damaged by high levels of phenylalanine, finishes most of its developing by the time its owner hits the teens. What people didn't realize was that keeping phenylalanine levels low is important not only in developing the brain, but also in maintaining a healthy brain. Researchers noticed that kids with PKU who went off of their diet had a higher chance for learning and behavioral problems as they got older. Teenagers and young adults who returned to the PKU diet reported that they felt better both mentally and physically. This is why we say now that it is important to make the low Phe diet plus formula a permanent part of your life.

Question? Answer:

Can I just eat foods that are low in Phe and skip the formula? What is in that formula anyway?

The formula is an essential part of the PKU diet. To understand why, it's helpful to know a little about phenylalanine (Phe). Phe is one of a group of chemicals called amino acids. Amino acids are the building blocks that make protein in our bodies. Without amino acids, our bodies couldn't make the protein needed for growth and all around well being. Most foods with protein contain Phe. Because of this, people with PKU have to avoid most foods with protein. The result? Their bodies aren't getting the protein they need to stay healthy. If we can't give the body whole protein, then we have to feed it amino acid building blocks so that the body can make protein on its own. This is where the formula fits in. The formula contains amino acids (other than Phe) that are required by the body to make protein. If a person with PKU doesn't take formula:

* Their body can't make protein properly. For a teenager, this can stop their growth, affect their skin and hair and decrease their overall well being.

* They will miss out on many important vitamins and minerals which are contained in the formula, and which are lacking in a low Phe diet. These vitamins and minerals are essential to good health.

* Their phenylalanine levels will go up! This is because Phe in the body is used when the body makes protein. If the body can't make protein (due to no amino acid rich formula), Phe is not being used and levels increase in the body.

Question? Answer:

Can I "eyeball" portions, or do I need to weigh and measure my
food?

Although it may not be possible to measure every portion, it isimportant that you take the time to weigh your food out at least once a week or more. This is because, over time, as people estimate size, they often unconsciously increase the amount of food they think equals a certain portion. It is most important to measure out starches, which contain high amounts of Phe. Consider measuring out a large quantity of food at once into several containers, which can be frozen or otherwise stored in individual portions until needed.

Question? Answer:

How many times a day should I take formula? Can I take it all at
once?

Your body can only use a certain amount of protein (and thus, amino acids) at once. If you give your body more amino acids then it can handle at once, the extra amino acids from the formula are quickly broken down and lost in urine. (Expensive urine!) For this reason, it is important to take your formula spread out through the day. Four times a day is the suggested minimum number of times (up to eight times per day).

Question? Answer:

What does that blood test tell me?

The blood test that you have at or sent in to your clinic measures the amount of phenylalanine in your blood. If your levels are high, there are two major possible reasons:

1. Too many high phenylalanine foods in your diet!
2. Not enough formula.

Question?		Answer:
How long do I have to follow this diet?		In order to stay healthiest, mentally and physically, it is necessary to maintain a low phenylalanine diet and to make the formula a part of your diet for your whole life.

Question?		Answer:
I heard that it doesn't matter if you follow the diet when you're older. Is this true?		The quick answer is, no! When people first discovered that a diet low in phenylalanine prevented problems like mental retardation in babies with PKU, they thought that it was only necessary to follow the diet during childhood. This is because the brain, which can be damaged by high levels of phenylalanine, finishes most of its developing by the time its owner hits the teens. What people didn't realize was that keeping phenylalanine levels low is important not only in developing the brain, but also in maintaining a healthy brain. Researchers noticed that kids with PKU who went off of their diet had a higher chance for learning and behavioral problems as they got older. Teenagers and young adults who returned to the PKU diet reported that they felt better both mentally and physically. This is why we say now that it is important to make the low Phe diet plus formula a permanent part of your life.

Question?		Answer:
Can I just eat foods that are low in Phe and skip the formula? What is in that formula anyway?		The formula is an essential part of the PKU diet. To understand why, it's helpful to know a little about phenylalanine (Phe). Phe is one of a group of chemicals called amino acids. Amino acids are the building blocks that make protein in our bodies. Without amino acids, our bodies couldn't make the protein needed for growth and all around well being. Most foods with protein contain Phe. Because of this, people with PKU have to avoid most foods with protein. The result? Their bodies aren't getting the protein they need to stay healthy. If we can't give the body whole protein, then we have to feed it amino acid building blocks so that the body can make protein on its own. This is where the formula fits in. The formula contains amino acids (other than Phe) that are required by the body to make protein. If a person with PKU doesn't take formula: * Their body can't make protein properly. For a teenager, this can stop their growth, affect their skin and hair and decrease their overall well being. * They will miss out on many important vitamins and minerals which are contained in the formula, and which are lacking in a low Phe diet. These vitamins and minerals are essential to good health. * Their phenylalanine levels will go up! This is because Phe in the body is used when the body makes protein. If the body can't make protein (due to no amino acid rich formula), Phe is not being used and levels increase in the body.

Question?		Answer:
Can I "eyeball" portions, or do I need to weigh and measure my food?		Although it may not be possible to measure every portion, it isimportant that you take the time to weigh your food out at least once a week or more. This is because, over time, as people estimate size, they often unconsciously increase the amount of food they think equals a certain portion. It is most important to measure out starches, which contain high amounts of Phe. Consider measuring out a large quantity of food at once into several containers, which can be frozen or otherwise stored in individual portions until needed.

Question?		Answer:
How many times a day should I take formula? Can I take it all at once?		Your body can only use a certain amount of protein (and thus, amino acids) at once. If you give your body more amino acids then it can handle at once, the extra amino acids from the formula are quickly broken down and lost in urine. (Expensive urine!) For this reason, it is important to take your formula spread out through the day. Four times a day is the suggested minimum number of times (up to eight times per day).

Question?		Answer:
What does that blood test tell me?		The blood test that you have at or sent in to your clinic measures the amount of phenylalanine in your blood. If your levels are high, there are two major possible reasons: 1. Too many high phenylalanine foods in your diet! 2. Not enough formula.