Treatment information for teenagers with PKU
Learn about treatment options that help you achieve low Phe goals more easily.
Making an easier life
Learning how to manage Phenylketonuria (PKU) on your own comes over time. Each person with PKU will be at a different stage in the process. What matters, is that you gradually gain new skills and independence in your PKU management. See Facing the facts of living with PKU.
Sometimes, it’s a matter of getting organised, of setting in place good habits that become a way of life, like remembering to prepare your supplement or substitute in advance. It’s all to do with becoming a self-sufficient, competent adult, who accepts responsibility for his/her health.
It may help to make a list of the things you’re already good at doing in relation to your PKU management and the things you’d like to improve. It may look like this:
| Things I’m good at | Things I’d like to improve |
|---|---|
| Preparing my protein supplement or substitute | Eating the wrong snacks |
| Counting my protein | Reminding Mum to restock cupboards with healthy snacks |
| Taking blood samples | My understanding about the effects of the disorder on my brain |
| Explaining my disorder | Reading labels to calculate Phe |
Keeping an effective food diary
Food records are an effective way for you to help better understand and manage the Phenylalanine (Phe) levels in your blood. It’s also an important tool for your dietitian or nutritionist as they plan your diet.
Your diary should include the type of food, its brand and the method of preparation. It should include exactly the amount eaten and the time. Aim to update your diary daily.
- One of the most important things is to maintain your special supplement or substitute. It should be consumed in three equal intakes throughout the day.
- Avoid the urge to eat whatever comes to hand by keeping low-Phe snacks within easy reach.
- Take up cooking and serve your friends!
- Learn how to substitute ingredients high in Phe for those with a lower Phe value or how to use less of the ingredient which is high in Phe. Your dietitian or nutritionist will help advise you.
When to arrange a blood sample
Always follow the guidance provided by your PKU specialist. In general, you should arrange for a new blood sample in the following cases:
- If your last blood Phenylalanine (Phe) level was greater than 10 mg% or less than 1 mg%.
- If your treatment has changed.
- If you’ve begun to incorporate medication into your treatment.
- If you’ve just got over a major illness.
Remember, the filter paper must be allowed to completely dry in a safe place for between 2-3 hours and should not come into direct contact with any surface, heat or sunlight. The sample should not be stored in a refrigerator and must be mailed within 24 hours of its collection.
