Encouraging your child to manage their diet independently

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. 

The next section will provide you with some suggestions on increasing your child’s independence in managing their low protein diet.

In combination with the small allowance of regular 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.  

For example, a picture of broccoli on one side, and a red cross on the other side to show this is not an exchange-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 exchange-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 exchange-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 exchange-free fruit and vegetable list to the supermarket and buy some new items each time to try out.   

• Get your child to thread exchange-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. 

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.  

These blood spots allow your child’s dietitian to check 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: 

1. Get them to wash their hands.  

2. They will prick their finger or thumb. 

3. Ask them to allow a drop of blood to form. 

4. Place the blood spot card up to the drop and allow it to drip onto the circle on the card, as close to the centre as possible. They should not press their finger or thumb against the card. 

5. Repeat step 4 onto the other 3 circles on the blood spot card. 

6. Once they have finished, they should cover the prick site with a little cotton wool and light pressure, bleeding should stop almost immediately. 

7. Allow the blood spot to absorb into the card and air dry enough that they lose the initial wet look before putting the card into the envelope provided (if they are not air dry then they can stick to the inside and damage the card). 

8. Send the blood spot sample card back to the hospital as soon as possible once you have completed it. This helps to make sure any changes to their diet can be identified quickly by their dietitian. 

Important points to remember: 

• Have all the equipment ready before you start. 
• Always take the blood spot sample at the time of day your dietitian has advised, but it is usually best to measure early in the morning before the first meal of the day. 
• Blood spots need to be taken from just 1 drop of blood, measuring 0.7cm – this is just under a centimetre in diameter. 

• If blood spots don’t meet this measurement and are taken from more than one drop of blood (overlapping on the card) the phe level result will not be accurate and will need to be repeated.
• Blood needs to be soaked right through the card so the lab can test it properly.
• If you have any questions at all about this process, contact your dietitian or the metabolic nurse at your hospital.

Top Tips:

• To encourage blood flow, your child’s fingers or thumbs should be warm.
• Be patient and calm, this will help relax your child.
• Practice makes perfect.
• Give your child lots of praise to show them they are doing well, especially when they first start doing this themselves.
• Keep your child’s finger/thumb below the level of their heart to encourage blood flow.
• Make sure there is a collection from your post box on the day you post their results. Let your child post the samples themselves to encourage their independence.
• Always contact your dietitian or metabolic nurse at the hospital if you have any questions about blood spots or if you need any more blood spot sample supplies.

• being able to think more clearly
• feeling less moody
• finding it easier to get along with others
• feeling less tired and having more energy for activities they enjoy
• being able to concentrate on their schoolwork
• being able to problem-solve better which is useful if they play sports or games at school.

‘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.

For further information, visit www.NSPKU.org