School is a time of excitement and nerves for every child and their parents. If you are a parent of a child with PKU, pre-planning and good communication between your family, school and if necessary your metabolic healthcare professional team, can allow your child to easily settle into school life.
Your child’s diet should include a variety of fruits and vegetables, as well as low protein grains, cereals, bread, pasta and crackers. It is important to educate your child about the importance of their PKU diet from an early age so that they are aware of what they can and can’t eat and can also let other people know.
Although Phe levels need to be kept in range it is also important to ensure your child gets enough nutrition and energy to meet their growing needs.
Before your child is old enough to manage their PKU themselves, it is valuable to get them to begin to better understand their diet and treatment. The following tips may be helpful when speaking with your child about PKU.
Being a teen with PKU can have its ups and downs. You need to manage your diet and you may also have to deal with lots of outside pressures too. You may be confronted with many types of risky behaviour. Always remember your future health is the most important thing, so don’t give in to the pressure to ‘fit in’. Talk to the people you trust about how you feel. It really can make a huge difference.
Friends can be a great source of support. Deciding to tell people that you have PKU is a personal decision. New friends won’t be able to tell that you have PKU, however they may notice your special diet and ask questions. Finding ways to explain PKU to friends can help you adjust to new situations and help people understand your condition.
Whether you are going away for a short local break or travelling overseas, with a little organisation and forward planning there is nothing to stop you from having a great holiday.
Following a low protein diet is important to keep our Phe levels under control for good health and development. Staying on diet can sometimes be tricky, support from familty and friends can be essential to keep to your goals.
Like the general population, people with PKU come in all shapes and sizes. Some people with PKU may have problems keeping weight on, while others, particularly if they are not very active, may need to manage their diet to prevent becoming overweight.
The choice of your PKU supplement contributes to your overall daily calorie intake, but what you eat is just as important. Before you make any changes to your diet please check with your PKU dietitian.
Women with PKU have to take particular care before and during pregnancy. This is because high levels of phenylalanine (Phe) in the mother can affect the unborn baby leading to heart and brain abnormalities and many other serious problems. Fortunately, if Phe levels are well controlled during pregnancy, there is no reason why any woman with PKU should not be able to have a healthy baby.
Some alcoholic drinks such as those that contain milk, egg or cream contain protein and therefore phenylalanine (Phe) e.g. If you choose to have these drinks you must count them in the usual way
Low Protein Connect supports people with metabolic conditions such as PKU, MSUD, HT1, HCU and GA1 with low protein recipes, community and resources to promote health and wellbeing.
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