Sensory Support to Aid Young PKU Patients With Academic Difficulties

Sensory Support to Aid Young PKU Patients With Academic Difficulties

Many children and adolescents with phenylketonuria (PKU) have academic difficulties that may be partly caused by attention deficit hyperactivity disorder (ADHD). Here is some information about sensory support and other remedies that may help your child in school.

PKU and behavior

People with PKU have a harmful buildup of an amino acid (one of the building blocks of proteins) called phenylalanine in their bodies. Consequently, they must rely on a phenylalanine-restricted diet to help prevent disease complications.

Behavioral issues that youngsters with PKU experience depend on the severity of their disease and whether they followed the low-protein diet from an early age. Such issues often include hyperactivity, stereotypy or repeated movements for no reason, anxiety, and aggression.

In addition, children with high phenylalanine levels tend to have ADHD and be more clumsy, talkative, and hypersensitive than healthy peers.

These issues can lead to learning difficulties in school, less independence, and lower self-esteem. Such students may experience increased frustration and be less achievement-orientated than those without PKU.

What is ADHD?

Children and adolescents with ADHD — which is a common neurodevelopmental disorder usually diagnosed in childhood — may have trouble paying attention and controlling impulsive behaviors, talk a lot, or be overly active. They also might daydream a lot, forget or lose things often, and squirm or fidget. Oftentimes, those with ADHD will make careless mistakes, take unnecessary risks, have difficulties resisting temptation, have trouble taking turns, or have difficulty getting along with others.

Causes of ADHD and behavioral issues in PKU

It’s unclear why PKU causes behavioral issues, although scientists think that high phenylalanine levels and subsequent drops in dopamine cause changes in the brain. Young patients who have ADHD are thought to have low levels of dopamine.

Dopamine is vital to the normal function of a brain region linked to executive function. Such function affects the ability to, for example, plan, think flexibly, and understand abstract ideas.

Treating ADHD and behavioral problems

Many PKU patients who have neurobehavioral issues require psychotherapy and sometimes psychotropic medication.

Still, the first step to treating such problems is managing blood levels of phenylalanine. This is generally accomplished with a low-protein diet, often called a PKU diet, and supplements. Many patients also respond to medicines such as Kuvan, which helps break down phenylalanine in the body.

Sensory support

Providing sensory support may help children and adolescents with PKU to deal with academic difficulties they may be facing in school.

Here are some things educators can do in school to help young students with PKU:

  • Monitor for signs of attention-deficit issues, and speak with the child’s parents if such signs are observed. Some children may need medication. It’s up to the child’s doctor and of course his or her parents to decide what is best.
  • Support the children’s independence while supporting their need to follow their diet. Young patients often try to enhance their independence by not adhering to their diet.
  • Monitor the possible need for supportive interventions such as occupational therapy, counseling, or other efforts to control behavior.
  • Follow a consistent break schedule during school hours.


Last updated: Sept. 15, 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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