Whilst it is important you support your child with their PKU management, it is vital to encourage independence from an early age. Involving your child in their own PKU management can help them understand why they must follow a low protein diet and take their protein substitute.
This will allow your child to feel that they are able to deal with situations when you might not be there, such as sleepovers at friends or families houses, going to school or when they are on school trips.
Allowing them to take some control gives them motivation to stick to their low protein diet and takes some of the pressure off you. If your child learns to manage their PKU and forms good habits from an early age, then these will be likely to continue into adulthood.
For individuals with PKU, protein is the nutrient which is most important as it is vital for growth. As the low protein diet for PKU is so restrictive, the protein substitute is essential as it provides all the amino acids (small units or building blocks) found in protein but no phe.
In combination with the small allowance of regular (natural) dietary protein, taking protein substitutes will make sure that your child has enough protein to meet their daily requirement so that they grow and develop normally.
As your child grows, they will be able to have increasing responsibility for taking their protein substitute. You can encourage this independence by including them in the preparation of their protein substitute if needed. Younger children could use a reward chart to record taking it each day.
When you are teaching your child to recognise the difference between fruits and vegetables that are protein-free and those that need to be counted in the diet, it may be an idea to use flashcards as a tool to help with this (flashcards are cards with information on both sides).
An example of a flashcard would be, a picture of broccoli on one side, and a red cross on the other side to show this is not an protein-free food. Making these yourselves may be a fun craft activity that your child can get involved with. They could help your child to memorise information.
Even though your child may have said they were not keen on certain fruits and vegetables in the past, this can change with time, so offer them again regularly. Remember, it can take up to 10 times trying a new taste to accept it.
Involving your child in helping with different ways to prepare, cook and eat protein-free fruits and vegetables will help them find the ways that they enjoy them the most. This also allows your child to get used to cooking which is a great skill as they get older.
Initially, what your child can do in the kitchen will be very limited and need plenty of supervision. Becoming familiar with how low protein foods and protein-free fruits and vegetables are cooked will be helpful for the future. It also means, one day, you might even get the occasional meal made for you too!
Here are some ways they can get involved:
You and your child could take an protein-free fruit and vegetable list to the supermarket and buy some new items each time to try out.
Get your child to thread protein-free fruits and vegetables onto skewers to make fruit or vegetable kebabs
Encourage them to use the scales – they can help you weigh out ingredients, so they become familiar with this
Have a go at planting your own mini fruit and vegetable garden and growing your own produce.
For lots of low protein recipe ideas, click here.
As well as cooking protein-free fruits and vegetables, encouraging your child to cook with specially manufactured low protein foods is a great way to encourage their independence.
Low protein specially manufactured products can be a little different than the standard versions.
When preparing low protein pasta and rice, with your help, let your child stir constantly for the first 2 minutes when the pasta or rice goes into the boiling water. They can also help rinse the pasta or rice in cold water after cooking to remove the starch and stop it sticking together.
Involving them in making low protein bread and cakes are a fun way to get your child involved in using specially manufactured low protein foods. Allow them to knead the bread dough and make novelty shaped bread rolls. They could mix the low protein cake batter and decorate the cakes with permitted toppings.
By now, you will be well used to the process of taking blood spots either with or for your child. As with the low protein diet and taking their protein substitute, it is best to encourage your child to gradually become independent in taking their own blood spots.
These blood spots allow your child’s dietitian to check whether their phe levels are within recommended ranges and make any changes if needed to their diet. Your dietitian will advise you on how often blood spots need to be provided for testing.
It is important that you or your child can provide good quality blood spots. If poor quality blood spots are received at the lab, they may not be accepted.
Before taking the blood spot sample, check the date on the testing card to make sure it has not expired and that all sections are completed. These cards may already have a label on them with all your child’s details (it’s still always useful to double check these are correct). If not, they will need to be added to the card.
Here is a step-by-step guide to providing a good quality blood spot sample. Once your child is doing this for themselves, they will need to follow these steps:
Important points to remember:
Having a good grasp on their low protein diet and low protein cooking from an early age can help your child stay on diet. Staying on diet will help to make sure your child stays healthy, grows normally and performs to their ability in school. Make sure to reinforce the benefits of staying on diet, including:
‘Diet for Life’ should be followed to ensure long-term outcomes are the best they can be. These outcomes include executive functioning skills, which are the skills that help get things done such as; managing time, paying attention and remembering details. When executive function isn’t working as it should, this can affect your child’s attention in school, their understanding of tasks and being independent.
If you have a daughter with PKU, although it seems a long time away, in the future they might like to have a family of their own. Women with PKU are advised to keep their blood phe levels extremely well controlled before they plan to become pregnant, as well as throughout their pregnancy. By already being used to keeping their phe levels in range, sticking to a low protein diet and taking their protein substitute, means this will be easier to manage in adulthood.
Each child is unique, and their progress with managing their low protein diet and taking their protein substitute independently will be a gradual process. Accessing the information provided will help to support your child’s PKU journey. The information can be used as and when needed, so there is no need to try and take everything in at once. Take it at you and your child’s own pace.
As always, your dietitian’s advice will be the most relevant for your child.