5 Tips for Making Every Doctor Visit Count When Your Child Has AADC Deficiency

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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AADC caregivers

Effectively managing your child’s aromatic l-amino acid decarboxylase (AADC) deficiency can be challenging.

Here are 5 tips for making the most of your doctor visits:

Make a list of your concerns

What have you noticed since the last doctor visit? Does your child show noticeable new symptoms or behaviors? Has a change in medication helped, or have there been side effects that you have questions about?

Make a list of your concerns before the visit, so that you can get all of your questions answered in that visit.

Keep your records together

Keep your child’s medical records together and take them with you when you go in.

It’s a good idea to keep this packet together with your health insurance information, as well as a current list of all medications and supplements and their usage frequency and dosage.

If your child is on a special diet, record it so that you have the information close to hand during the doctor visit.

Have a plan for the appointment

What are your goals for the visit? Do you need to discuss a medication change, a new symptom, something you’re curious about? Have a plan to make sure that everything you need to accomplish can be done, and so you don’t forget a key point while others are being discussed.

Record your appointment

Even when doctor appointments go according to plan, things can move very quickly and small details can be missed. Use an app on your phone or other device to record precisely the doctor’s recommendations. Make sure you get your doctor’s permission to record before you start recording.

Update your treatment plan

At the end of every appointment, ask the doctor to review the treatment plan for your child. A treatment plan is a detailed packet containing information about the patient’s disease, the goals of treatment, treatment options, and potential side effects and concerns.

Update your child’s treatment plan after every appointment. If your child is in daycare or school, ensure that the school’s copy of the treatment plan is updated after each appointment, even if no changes have been made.


Last updated: August 2, 2019


AADC 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.