Involving your child in their low protein diet

Diet

By now, your child will have developed their own little personality. With their blossoming identities forming, now is a good time to encourage them to learn more about their PKU.

A good place to start is by involving them in their low protein diet and taking their protein substitute (luckily, at this age they are very keen to help!). If your child is included in the management of their low protein diet from a young age and forms good habits early on, then these will be more likely to continue into adulthood.

The importance of protein substitutes

Protein is an important nutrient for the human body as it is vital for growth. The protein substitute is essential as it replaces high protein foods that must be avoided and it provides all the amino acids (small units or building blocks) found in protein except for phenylalanine (phe). It also provides vitamins and minerals.

The protein substitute, in combination with a small allowance of regular dietary protein advised by their dietitian, will make sure that your child has enough protein to meet their daily requirement so that they can grow and develop normally

As your child grows, they should become more and more responsible for taking their protein substitute. You can encourage this independence by:

Letting them watch you prepare the protein substitute and talk them through how you prepare it step by step.
Including them in the preparation or parts of the protein substitute preparation, if they are capable. For example, let your little one empty the powder from the sachet into the beaker, add the measured water or stir it up.
Letting them shake the pouch protein substitute well before they drink it.
Using a reward chart to record when they have helped to prepare their protein substitute as well as for taking it each day.

Increasing their involvement bit by bit in their protein substitute preparation and taking of their protein substitute, increases their familiarity and confidence and gradually leads them into being able to do this for themselves.

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Growing their own fruit and vegetables

Food is such a big part of all our lives, but especially so for people with PKU. A useful way to get your child to understand about their low protein diet, could be to start your own fruit and vegetable patch. Look out for the tomato seeds we will be sending out for a great way to start!

This is a great way to teach your child where food comes from and generate conversations around their low protein diet and the many types of permitted vegetables and fruits they can eat. You don’t need a garden for this – a planter box or some plant pots on the windowsill is ideal. Some areas have community gardens or allotment sites that you can access as well.

When you start your gardening journey:

Choose easy-to-grow permitted vegetables such as carrots, lettuces, and radishes, as well as foods that kids love to snack on, like cherry tomatoes and strawberries.
Pick out the packets of seeds together at the supermarket or your local plant nursery and make an afternoon of planting them.
Make your child responsible for these plants and it can be their “job” to water and care for them.
You could request a child-friendly gardening set and/or tools as presents from loved ones.

If your child has grown their own vegetables and fruit, then they may be more likely to want to eat them and this might help encourage your child to try vegetables and fruits they may have refused in the past.

You could:

Print off a permitted fruit and vegetable list and get your child to tick these off once they have tried them.
Let them receive a non-food or drink related reward once they have got through the whole list. It’s worth knowing, that even if a child dislikes a food when they first try it, it can take several attempts before they accept that food, so it is worth persevering.
Be creative with cooking and presenting your child’s permitted fruit and vegetables, as this will encourage children to eat them.
Try stir-frying, grilling or roasting vegetables.
Add a variety of vegetables to a low protein sauce or top them with a sprinkle of low protein cheese. Make colourful fruit or vegetable kebabs or patterns with the fruit and vegetables on their plate to make their meal more fun.

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Shopping Together

Another way to involve your child in their low protein diet is to let them help when you’re doing a supermarket shop. Before you go, get them to create their own low protein shopping list of foods they like from the NSPKU Dietary Information Booklet. This doesn’t need to be written out if they are not yet able, instead they can do some drawings of the low protein items they like and want to buy. They can then tick the items off their shopping list as you go around the supermarket aisles.

You could ask them to look out for the low protein foods that you plan to buy as well, so that they become familiar with recognising the usual low protein foods you have at home. Treat this like a type of treasure hunt to make it more of a game than a chore. Whoever spots the most items first is the winner. This is also a good way to show them the many foods they can eat and enjoy in their low protein diet. If they are at an age when they can read, show them food labels and point out to them where protein is on the nutritional table. This will encourage them to get used to checking labels.

If possible, allocate your child their own colour-coded drawer (green for exchange free foods/snacks and amber for snacks and exchanges) or cupboard space that they know is especially for their low protein foods. They can be responsible for packing away their low protein foods into their special drawer or cupboard after shopping. This area can be a good place to store their exchange- free or low exchange snacks too.

You can label these low protein foods with label stickers and write on the exchange value, so you don’t have to look it up. This way, if they ask for a snack and want to help themselves, they will know where to take it from and you can know how many exchanges are in it. This could be helpful to prevent foods being eaten accidentally if all the household’s food is kept in the same place.

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Cooking Together

As well as growing your own fruits and vegetables and shopping together for low protein foods, your little ones can start helping to cook with them too. Let them be involved with adult-supervised tasks like washing the fruits and vegetables, peeling and/or chopping them using a child’s knife and placing them into a pan of cold water to be cooked. The more your child is involved in their low protein diet, the more likely they are to be willing to try new things.

Let your child help to choose what low protein meals they would like - you could use a chalkboard or whiteboard or print off a meal planner and you can plan together a week’s low protein menu using pictures or words if your child is able to write. Keep this in the kitchen where it can be a reminder of what your child will be having. This is also a really good way to keep track of what your child is eating and ensuring variety in their meals. Having this meal plan may be a benefit when it comes to food shopping too.

You could make your own exchange chart by cutting out exchange foods together from magazines or printing off images from the internet and sticking them on the fridge. Add exchange weights onto the pictures. This will help your child when you weigh out exchanges together. You can ask your child to move a magnetic counter on to your chart each time they have eaten an exchange to keep track of their daily intake.

As most kids love to bake, give them an Explorers Club apron and let them make a low protein mess! Specially manufactured low protein flour alternatives can be used to bake low protein bread loaves or buns, and your child can burn off some energy by kneading the dough. Specially manufactured low protein cake mixes make great cupcakes and your child can do the mixing (and tasting). You can have lots of creative fun together by letting them decorate their low protein cupcakes with permitted icing, sprinkles and edible glitter. The more sparkly the better!

Involving them in their low protein meal planning and meal preparation is a great way to build their confidence in the kitchen.

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Food and Play

Playtime can be another great way to get your child to explore low protein foods. Encourage them to play kitchens or shop with their dried low protein pasta and rice as well using artificial play food items that are permitted in their low protein diet like apples, bananas, cabbage, lettuce and cucumbers. You could also get some play foods that are counted as phe exchanges, like beans, broccoli, cauliflower and peas. This is a good way to get them to recognise the foods that need to be measured in their diet.

You could wash out an empty protein substitute packet and let them use those as part of their pretend play. They could have a low protein teddy bears picnic with protein substitutes included!

Familiarising your child with the naturally low protein and specially manufactured low protein foods they can have in their low protein diet, from such a young age, will allow them to be knowledgeable about what they can eat as part of their diet.

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‘Diet for Life’

Having a good grasp on their low protein diet and low protein cooking from an early age can help your child stick to their low protein diet. Staying on diet or “Diet for Life“ will help to make sure your child stays healthy, grows and develops normally and performs to their ability. Make sure to chat to your child about how their special diet and protein substitute helps them to:

-Have energy to play.

-Be able to do their schoolwork or preschool activities to the best of their ability.

-Be able to concentrate on story time.

The low protein diet should be followed for life 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, their understanding of tasks and being independent.

Each child is unique, and their progress with managing their low protein diet and taking their protein substitute independently will be a gradual process so don’t be concerned if it doesn’t click straight away!

As always, your dietitian’s advice will be the most relevant for your child.

For information, visit www.NSPKU.org

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