Your PKU Treatment plan

Your individualized treatment plan is based on your Phe level and tolerance. It is adjusted, if necessary, to keep your Phe levels in the safe range to guard against deficits in executive functioning and the development of psychiatric symptoms. You will need to visit your PKU clinic regularly in order establish your treatment program. During your visits, you and your healthcare team will review:

  • Your Phe intake from natural food items
  • The amount of medical formula you are consuming
  • The results of your monthly blood Phe monitoring —to ensure your Phe and tyrosine (Tyr) levels are being maintained by your diet
  • The results of regular tests of your vitamins and mineral levels—to ensure your diet is adequate to keep you healthy [ref PKU Guidelines]

Getting the most from your PKU clinic visit

Your visits to your PKU clinic will involve different members of your healthcare team. At your appointment, you will see:

  • Your physician
  • Your dietitian
  • Your genetic counselor

Depending on how your clinic is set up, you may also see:

  • A nurse practitioner
  • A social worker
  • A psychologist

Each member of your PKU clinic team plays a key role in helping you maintain your health. Your team will:

  • Ensure your Phe, tyrosine (Tyr) and vitamin levels are being maintained
  • Provide you with the information you need to continue making healthy dietary choices
  • Answer any questions you may have about your health in general, and PKU specifically

Your clinic team is an essential support system. But YOU are the most important member of the team to ensure ongoing metabolic control.

Before I go [to my clinic appointment], I make a list of questions I want my dietitian/doctor to answer and I also write a bit about problems or concerns that I'm having with my diet at that time. I bring it to the clinic and make sure I get those questions answered.

Leah, 15 years old

To get the most from your PKU clinic visit, clinicians and dietitians recommend that you

  • Consider in advance what you would like to accomplish at the clinic visit
  • Prepare a list of questions or topics you’d like to discuss
  • If you are currently on a low-Phe diet, bring information about your current diet, Phe tolerance, and formula intake
  • If you are not currently on a low-Phe diet, bring information about your previous diet, Phe tolerance, and formula intake
Establishing regular email and phone contact with my clinic team works well. It's quick and easy to send an email. If the issue is more complex or confidential, a phone call sometimes works best.

Les, 35 years old

Need more information on PKU, or on PKU treatment? PKU Binder