PKU Issues

What are the implications of PKU?

If a strict diet is not followed:
Almost all individuals with PKU occassionally have lapses in their dietary control and may only have few negative effects. However, high phenylalanine levels for long periods of time can cause emotional and psychological problems. Think of the implications you yourself may have experienced when not following the diet and taking the formula:

• trouble concentrating
• short temper, mood swings
• anxiety, panic attacks and depression
• lethargy (lack of energy)
• headaches
• memory loss
• sleep disorders
• agoraphobia - fear of being in a public or open place
  

Controlling your phe levels may be a challenge, but it prevents your PKU from affecting your progress in school, college or work, as well as your social and personal life. In rare cases, if the diet is terminated permanently, seizures or other severe neurological symptoms can occur.

In cases of Maternal PKU, it is extremely important to resume or maintain the diet, because you are protecting both your own and your unborn child's health.

If a strict diet is followed:
Even if you do control your phenylalanine levels, you may still have some effects, for instance in arithmetic or other analytical activities, or in memory, problem solving and attention, but to a lesser degree. Maintaining dietary control helps you improve academic, professional and personal life. It makes you feel better and stay healthier.

How long must a person with PKU stay on the diet?

It is now recommended that people with PKU must maintain diet for life. In the past, many people with PKU were advised to discontinue their special diet when they were children. However, studies have suggested that the diet should be continued indefinitely into adulthood to avoid the harmful effects of high phenylalanine levels.

It is important to understand that even if you have been off the diet, it is never too late to go back on the diet. By controlling your phe levels, you will soon feel and think better and be able to better remember things and concentrate.

How is PKU monitored?

PKU is monitored with blood tests that check for phenylalanine levels in the blood caused by individuals’ phenylalanine intake through food. The more phenylalanine that is in your food, the higher the levels in your blood.

As an adult with PKU you should keep your blood phe levels between 2 and 10 mg/dL (120-600 mmol/L). You can monitor your blood phe by having blood drawn in a hospital or clinic or by sending a blood filter paper specimen from home.A home blood monitoring system is being developed but is not yet available.

Monitoring your blood phe levels regularly is very important and helps you better control your diet. Your phe levels are an indicator of how well you are managing your diet, whether you are making the right food choices and what you may need to change in your diet. It also provides an opportunity for communication and support from the medical staff regarding your diet.

Knowing your phe levels encourages you to keep going with your diet: Knowing that your phe is in an acceptable level encourages you to keep it that way! Finding out that your phe levels should be lower motivates you to make the effort to lower them!