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Preparing for your child to enter school

Child being brought to school by parents – to convey idea that the parents can “hand out” their child to the care of others without risk

Phenylketonuria (PKU) should never prevent your child from participating fully in life. It’s natural to feel a little anxious as you prepare your child for early education. It may be the first time your child has spent long periods of time outside your control. With planning and good communication, you can expect your child’s diet to be carefully monitored. It’s important that you inform your child’s head teacher, the class teacher, the school nurse and the school dinner supervisor, as well as any other person who may be involved in the daily care of your child.

Canteens vary from school to school. You will need to discuss whether you provide your child with a meal or select from the menu offered by the school. Encourage your child to take the supplement or substitute with him/her so that its intake is spread across the day. Label it with your child’s name and ensure it is kept refrigerated.

At different stages of his/her life, feeling different may embarrass your child. Some may want to discontinue taking their supplement or substitute with them to school. Remind your child that his/her special diet is a means to keeping his/her brain healthy. See Everyone is different.

Help your child’s teachers and classmates understand PKU by downloading the following tools:

Letter about your child’s dietary needs for your child’s teacher.
Fold-down pocket-sized ‘Living with PKU’ guide for your child to keep and hand out to his/her friends and their parents.

Guide for children with PKU

Help your child understand his/her condition and the importance of a low-Phe diet.

Coping with PKU whilst being independent.

Frequently asked questions about PKU and treatment options.

PAH (Phenylalanine Hydroxylase)

An enzyme which works together with Tetrahydrobiopterin (BH4) to convert Phenylalanine (Phe) to Tyrosine (Tyr) in the liver. A deficiency in PAH results in high Phenylalanine levels in the blood, which is the biochemical hallmark of Phenylketonuria (PKU).

Phenotype

An observable characteristic or trait of an organism. Phenotypes result from the expression of an organism’s genes as well as the influence of environmental factors.

phenylalanine (Phe) tolerance

The quantity of Phe a patient may consume without a significant increase in her or his target blood Phe levels. Usually expressed as daily intake.

Phenylalanine (Phe)

A building block of protein, and one of the 10 essential amino acids. An inability to metabolize excess phenylalanine is the characteristic feature of Phenylketonuria (PKU). When the blood concentration of Phenylalanine exceeds what is considered a healthy level, excess amounts may build up in the brain, causing mental retardation.

Phenylalanine Hydroxylase

See PAH.

Phenylketonuria

See PKU.

PKU (Phenylketonuria)

An inherited metabolic defect in protein metabolism. In PKU, the Phenylalanine Hydroxylase (PAH) enzyme is unable to convert Phenylalanine to Tyrosine, resulting in a build-up of Phenylalanine (Phe) in the blood that eventually passes into the brain, causing mental retardation and other neurological problems.

Protein

A type of molecule produced by the body from Amino acids.