If your child’s phe levels are out of range and there does not seem to be any reason why, it could be because they are deliberately eating more exchanges than they are advised to by their dietitian.
If you suspect this is the case, then ask them why. It could be because they:
You could use The Introduction to Phenylketonuria to help to go over the basics of PKU.
Maybe spend some time going through which foods are exchange free and which need to be counted as phe exchanges. For younger children, flashcards are a good tool for helping with this (flashcards are cards with information on both sides. 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.
Your child may be influenced to eat foods that are not permitted in their diet by their peers.
Discuss with your child how they can explain to other children what PKU is and their low protein die. Explain that many people have special dietary restrictions, it is not something to feel embarrassed or ashamed about. If everyone were the same, the world would be a much more boring place!
If your child says they don’t like low protein foods, sit down with them and go through the National Society for Phenylketonuria (NSPKU) dietary information booklet and select new foods to try out.
You could look for recipes together and allow them to select the ones they’re willing to taste. They could even help make these. By allowing them to select recipes themselves, it might mean your child is more likely to try new foods, or try foods prepared or cooked in a different way. See our collection of great low protein recipe ideas here.
Talking over the consequences of cheating is useful too. Remind them that having well controlled phe levels means they are likely to:
There may be certain times when they are finding it harder to stick to their PKU diet and therefore they end up cheating. This could be at school or staying away from home with friends or family. If this is the case, it would be a good idea to talk over some solutions to help. For instance:
Discuss why it is important not to swap foods or drinks with friends. Their low protein food won’t be harmful to other children, but the regular foods they swap will be too high in protein.
Talk with your child about how they can explain to other children in their school about what PKU is and their low protein diet if they are asked.
Keep giving them positive messages that their diet is special and will keep them happy and healthy.
If your child tells you they are cheating because they feel different or are being teased at school, try to reassure them that other people follow special diets too – like children who have diabetes or nut allergies. If your child agrees, it could be worth asking the school to make sure the other children know what PKU is so they can understand that this low protein diet helps your child to grow and keeps them healthy.
Get in touch with the adult whose house your child is staying at to tell them about your child’s PKU (if they are not already familiar with it). You could provide them with a copy of the Introduction to Phenylketonuria or print off an About Me Leaflet for them to read over. This can help reassure the parent there is nothing to worry about and means your child knows that the adult in the house is aware of their special diet.
Give your child their own supply of low protein foods and snacks so they always have options available
Ask the adult what type of food or drinks will be offered, there may be some suitable options that your child is fine to have
Offer to provide low protein options for meals or celebrations to whoever is looking after your child
Talking through why they are cheating could help them feel able to come to you in the future, so it is worth making sure your child knows they are not in trouble if they cheat, but they do need to tell you so you can come to a solution together.