Preparing for Doctor Visits When You Have a Child With PKU

Preparing for Doctor Visits When You Have a Child With PKU

If your child has been diagnosed with phenylketonuria (PKU), you may be wondering what information is best to bring to a doctor’s appointment, and how you should prepare.

Upon a diagnosis, your child is usually assigned to a doctor specialized in PKU treatment and care. Here are some tips for getting ready for visits.

Make a list of your concerns

It’s easy to forget the questions you want to ask, and the concerns you may have about your child’s care. Make a list of these questions and bring them to your appointment. Make sure that the doctor answers your questions and addresses your concerns.

For example, have you noticed new symptoms in your child? Or have you recently read information about your child’s disease that you would like to discuss?

Keep your records together

Keep your child’s medical records together with your health insurance information, and take them with you to these appointments.

Diet is extremely important for PKU patients, so keeping detailed records of your child’s diet, and any changes or problems that arise, can be helpful in managing their condition.

Keep track of your child’s symptoms, preferably on paper or electronically. It’s easy to miss symptoms day to day, and good record keeping can make it easier to recognize patterns and subtle changes.

Record the appointments

If your doctor agrees, recording the appointment can be a good way to make sure that you don’t miss any important points. If your doctor is not comfortable with a recording, you may want to bring a friend or relative with you for the appointment, to help you keep track of what the doctor says and recommendations given to you.

Update your child’s treatment plan

At each appointment, review your child’s treatment plan with the doctor. A treatment plan is a detailed description of your child’s condition, the symptoms they experience, and the child’s medications, supplements, and nutrition plan.

If changes need to be made, make sure that you update the treatment plan accordingly.


Last updated: June 18, 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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