Managing The Effects of PKU

People with PKU often have health issues that seem to be in addition to their PKU. Do you think you have attention deficit hyperactivity disorder (ADHD) as well as PKU? Have you been prescribed medication for ADHD that did not improve your ADHD symptoms? It is possible that the difficulties with executive function (EF) that people with PKU can experience are playing a role in any ADHD symptoms.

Consider if you have experienced the following:

  • Memory problems
  • Difficulties with processing information quickly
  • Anxiety issues
  • Depression
  • Difficulties with social and emotional situations

You may not have realized it, but these issues may be related to your PKU.

We all know that when a person with PKU goes off the low-Phe diet they are likely to experience the effects of elevated Phe levels. What you may not know is that even when a person with PKU is on diet, they may have challenges with EF and psychiatric symptoms. Some people may experience difficulties with attention, working memory, and processing speed, and some may develop social, emotional, or psychological problems. Even slight increases in Phe levels can cause subtle issues with EF in a variety of ways.

Studies have shown that 52% of adults with PKU experience symptoms of psychiatric distress. Common symptoms include:

Many people with PKU also report having symptoms of attention deficit hyperactivity disorder (ADHD).
Keep your Phe levels in control. If your Phe level is high, never give up! Keep working to get level down—it is so important!

Adult with PKU

All this may seem frightening to you—but keep in mind that research has shown that difficulties with EF can be somewhat reversed by maintaining stricter control over your Phe levels. You can also teach yourself to overcome or deal with certain elements of these problems by using simple recommendations from doctors and other adults with PKU who have already learned to manage difficulties with EF.

By being able to recognize issues with EF, you will be better prepared to manage them.

The number one question I get is about ADHD. The majority of questions from adults with PKU stem from the same concern: ‘is it possible I have ADHD as well?

Kevin Antshel, PhD, Syracuse University

Tips to manage difficulties with executive function, processing speed, and ADHD

Even if you are on your low-Phe diet, your Phe levels may affect your executive function (EF) skills. This impacts processing speed and potentially causes symptoms of ADHD.

Consider testing your blood Phe levels and gaining greater control over the amount of Phe you are eating, if needed. Many people report feeling better when they have more control over their Phe levels and you may find your EF skills improve.

Implementing simple adjustments may also help you deal with difficulties related to EF and with symptoms of ADHD. Our tips section below has a variety of suggestions.

Tips to better manage daily activities

  • Monitor your low-Phe diet more closely. By gaining more control over your Phe levels, you may find that some symptoms of executive function (EF) impairment diminish. Be persistent—if you have a setback, continue on and learn from it.
  • Identify problem behaviors you have experienced and develop a plan for overcoming them. For example, do you find you anger quickly and behave poorly when frustrated? Think of different ways to react and remind yourself of these before you become frustrated.
  • Use your mobile phone or other electronic devices such as iPads and computers to help you manage your time. Update your calendar with reminders and follow up on your emails Eliminate clutter around your house and workplace.


Tips to stay on task

  • Set aside a dedicated workplace.
  • Simplify activities and tasks as much as you can.
  • Use tools to streamline your tasks. For math problems, use a calculator. For writing, use a computer or an iPad.
  • Use a timer to monitor your progress and keep you on track
  • Chunk large projects or jobs into smaller parts that are easier to oversee
  • Create checklists. You can add more tasks to a checklist as needed and strike off tasks as you complete them.
  • Prioritize your checklist by importance and deadlines. How important is each task? When do you need to complete each task?
  • Don’t punish yourself if a task isn’t perfect. Just do your best!
  • Reward yourself. Did you finish a big project at work? It may be time to indulge in a small gift!
  • Honor the small accomplishments—attach fun rewards to smaller tasks to help you remember to do them.


Tips to focus your attention in meetings or other important settings

  • Take notes! It is a good practice for everyone.
  • Keep a pad of paper and a pen with you during longer meetings, or when you need to maintain attention for longer periods of time. If you feel your attention drifting, put a checkmark on the paper. This will help you refocus your attention to the task at hand.
  • Ask lots of questions during meetings or at other times when you need to pay attention for longer periods of time.


Tips to aid your memory

  • Read longer paragraphs out loud, or ask questions aloud about it, to help you remember difficult or long passages.
  • Connect items you need to remember with an image in your mind. For the image, visualize something that is familiar to you. For example, if you need to remember a number, imagine putting that number into your calculator or dialing it on your phone. You may find the visualization easier to remember than the numbers alone. Use mnemonics. For example, take a series of words you need to remember and link them in your mind with a familiar word or phrase. If you needed to remember the Greek philosophers Socrates, Plato, and Aristotle, you could instead keep in the mind the shorter acronym “SPA” (Socrates, Plato, Aristotle) or “SAP” (Socrates, Aristotle, Plato) rather working to remember these names separately.
  • These aren’t the only strategies that can help. Everyone is different, and what works for one person may not work for another. Don’t get discouraged if progress seems slow. Keep working at it and you will see results. 

Off diet but hoping to return? See our resource Returning to Diet: Management Tips & Pointers From Adults With PKU