Encouraging independence
First steps to success
The older your child, the greater his or her responsibility to manage blood Phenylalanine (Phe) levels. As your child develops, it’s important to encourage self-awareness about his/her disorder that ensures wellbeing in later years. Now is the time to establish and maintain good habits.
By the time your child is five years old, he/she should understand that being healthy involves:
- Taking a special supplement or substitute; having food checked before it’s eaten, having blood tests and calculating Phenylalanine (Phe) in food.
Achieve this by:
- Involving your child in the preparation of meals, helping him/her take steps towards independent eating by learning to identify ‘yes, no, or maybe food’ in which Phe must be calculated. Make the occasion into a game whereby your child can learn the proper technique for weighing or calculating Phe. Discuss why it’s important to choose ingredients properly.
By the time your child is eight years old, he/she should understand that:
- He/she has a special disorder called PKU, which means he/she can’t eat food high in Phe and be aware why taking special supplement or substitute is important; what is considered a high blood Phe level.
Achieve this by:
- Encouraging your child to maintain a food record. Teach him/her to use scales and have ideas about meal choices when at home or eating out by discussing menu choices. At the same time talk about good Phenylalanine (Phe) ‘choices’ and which food has the most or least amount of Phe.
By the time your child is 12 years old, he or she should understand that:
- Sensible meal choices are part of the overall treatment plan, which provides nutrition and lowers blood Phenylalanine (Phe) levels.
Achieve this by:
- Giving your child confidence and a greater sense of control over his/her future by increasingly involving him/her in disorder management and tasks such as blood sampling and supplement or substitute preparation.
Taking blood samples at home
Blood samples are usually taken from a child’s heel up until the age of one year because of the relative size of the surface in comparison with their fingertips. However as children begin to walk, their feet become toughened and fingertip samples are taken. Ask if your PKU clinic provides blood-sampling equipment or purchase a finger-pricking device, identical to the pens used by diabetic patients, from your pharmacist.
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 to the hospital within 24 hours of its collection.
