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Juggling with family needs and PKU

family meal with baby in high chair – to convey idea that meals can be taken normally

Adjusting to the demands of a new baby - let alone one with special needs - can take its toll even if you’re healthy from the outset. Make sure you eat healthy snacks, even if you can’t manage full meals, and nap when your baby naps. If you’re unwell, contact your family doctor for advice. Prescribed medicines are generally fine to take if you are breastfeeding, but remind your doctor that your baby has PKU.

If you yourself suffer from PKU, you may need to take extra steps to ensure you remain in the best possible health. Your PKU specialist will help determine the best combination of treatment.

Make mealtimes a family occasion

Have set times for meals and snacks.
Offer food at the table.
Stay positive about food and avoid treating it as a reward.
Include your baby in family mealtimes from an early age to encourage good eating habits.

What to tell your child’s carer

Each person who will be taking care of your child should know about his or her special needs.

Download a guide for your child’s carer. Print a copy to offer to your babysitter or nursery staff.

Guide to raising a newborn baby with PKU

A guide to the early months including answers to questions about your new baby’s health.

Frequently asked questions about PKU and treatment options.

Receive the latest information about PKU, treatment options and tips on how to manage your family and social life.

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.