Learning Disabilities in Phenylketonuria and How to Cope With Them

Learning Disabilities in Phenylketonuria and How to Cope With Them

Children with phenylketonuria (PKU) may have learning disabilities because, without treatment, the condition can cause damage to the brain and nervous system. As a parent or caregiver, it’s important to be aware of this potential difficulty. This way you can ensure your child gets all the help needed to succeed in school.

What causes learning disabilities in PKU?

PKU is a rare genetic disorder characterized by high levels of phenylalanine in the blood. Phenylalanine is an amino acid (one of the protein building blocks) that people with PKU cannot metabolize or break down.

Maintaining a low-phenylalanine diet can be sufficient to manage the condition. There also are some medications that can help.

Failing to maintain a low-phenylalanine diet can result in a buildup of phenylalanine, which can cause permanent neurological damage. There is evidence that even short-term increases in phenylalanine (the result of a “cheat” day from the diet, for example) may have long-term consequences.

Which learning disabilities can PKU cause?

PKU can cause behaviors similar to attention-deficit/hyperactivity disorder (ADHD). Children may seem unfocused or unable to concentrate. They may have difficulty with math or reading comprehension, trouble multi-tasking, as well as having trouble understanding diagrams or completing assignments.

Some children may show signs of low energy and fatigue, despite having had a rest. They may struggle with small tasks like fastening a button or doing up a zipper.

These symptoms may worsen when blood levels of phenylalanine are higher, so it’s important to be on the lookout for these behaviors.

How to manage them?

Setting up an individualized education plan (IEP) for your child is important. An IEP is a set of goals for your child’s education during the school year, and a concrete plan of action between you and the school to make sure that your child gets all the help he or she needs. This might include giving your child more time to complete assignments or exams, or making other accommodations.

It’s also a good idea to talk to your child’s teachers so that they are on the lookout for any behaviors that may indicate they have high levels of phenylalanine. Make sure they are aware of your child’s special diet and have your contact information if there is an emergency. You may want to do this as part of a treatment plan — a document that describes your child’s condition, as well as outlining the special diet and any other treatment guidelines that your doctor has recommended.


Last updated: Aug. 20, 2020


Phenylketonuria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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