What is PKU gel?

PKU gel is a concentrated, powdered protein substitute which when mixed with water is easily made into a low volume, smooth, semi-solid. One sachet contains the equivalent of 10 grams of protein and all of the vitamins, minerals and trace elements that are needed to help meet your child’s requirements. PKU gel can also be made into a low volume drink if your child prefers to continue with a liquid protein substitute.

Who is PKU gel for?

PKU gel is for infants with PKU from 6 months of age and is suitable for many of the childhood years. Your dietitian will advise on the age at which taking PKU gel is no longer suitable for your child and when it is best for them to change to another protein substitute.

Why does my dietitian want my child to try PKU gel?

At around 6 months of age, it is important for babies to start introducing solid food, often called weaning. As well as helping them get all of the nutrition they need to grow, weaning helps them progress their oral skills which support chewing and language development. PKU gel is a second stage protein substitute that can be introduced alongside your baby’s phenylalanine-free infant formula at around 6 months of age. As it contains all of the nutrients (without phenylalanine) that your baby needs and it is made to a smooth, semi solid texture, it is ideal for trying at this stage.

Click on the following video link for some useful information from a leading dietitian who discusses weaning an infant with PKU and the use of PKU gel at this stage.

NOTE – This video is based on UK practice; check with your dietitian if you are unsure about any aspect of its’ content.

How much PKU gel does my child need?

The amount of PKU gel your baby or child needs, will depend on a variety of factors including their age, weight and PKU control. Initially, they may only need a very small amount which will likely increase as they grow. Your dietitian will advise exactly how much PKU gel your child will need each day.

How do I make up PKU gel as a gel?

  1. Empty the contents of the sachet in to the blue beaker provided*
  2.  Add 30ml of cold water
  3. Secure the lid on the beaker and shake well for 10 seconds
  4.  Leave to stand for two minutes; a smooth gel will form
  5.  Consume with a spoon.**

*If you do not have the blue beaker, ask your dietitian to request one be sent to you. Alternatively, a small beaker with a tight lid can also be used.

**As PKU gel is concentrated and does not contain much water offering your baby or child water (or another permitted drink) is recommended straight after taking PKU gel.

How do I make up PKU gel as a low volume drink?

1. Empty the contents of the sachet in to the blue beaker provided*
2. Add 80ml of cold water
3. Secure the lid on the beaker and shake well for 10 seconds
4. Consume immediately in a bottle or cup of choice.**

What flavour is PKU gel?

PKU gel is available unflavoured and is suitable from 6 months of age. It is also available in orange and raspberry flavours which are suitable from 1 year of age. PKU gel can also be flavoured using one of Vitaflo’s FlavourPac sachets; available in blackcurrant, orange, raspberry and tropical. Some people also use permitted flavourings. Ask your dietitian if unsure.

Other useful bits of information.

The following video includes lots of practical information and hints from parents who have successfully weaned their baby onto PKU gel. Although it may feel stressful and daunting, it is very reassuring to know it can be done!