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Family life is full of challenges. With PKU, one constant question is, "what are we going to eat?" Non-PKU members of the family will need and want natural foods. Children with PKU must have their Phe-free formula and low-protein foods to keep their brains safe and healthy.1 See the PKU community's ideas section for making meals work.
Sometimes, the "non-PKU" kids in the family feel left out. They want a "formula" too. You can make a shake or smoothie to bring everyone together.
Family dynamics
When a child has a serious disease, it is easy to get caught up in worry and management. Remember to relax and enjoy your child. Schedule fun things as well as doctor appointments. Use praise to reward children for making good choices every day. You don't want to only scold when they slip up.
Keep in mind that high Phe can cause your child to be grouchy, anxious or sad.1,3,4,5 So when mood or social problems seem to get worse, it may be partly due to high Phe. To help your child feel better, focus on lowering Phe. Try not to get pulled into fights over small things – consider that it may just be the high Phe talking.
Ask for help if you need it
When you have a question or feel overwhelmed, you can always ask for help. Check the PKUniverse community section of this site, where you can find other PKU parents to chat with.
It's also ok to have your child talk with a therapist when things get rough. Tell the therapist that your child has PKU, and that high Phe may be an issue. You should also feel free to talk to a therapist yourself. They can help you with practical ideas as well as helping you feel better.6
Like anything else, working with PKU in the family takes practice. Every day gives you a chance to learn more.
