Effectively managing your child’s aromatic l-amino acid decarboxylase (AADC) deficiency can be challenging. Because AADC is so rare, it is likely that your child’s school or daycare personnel will not be familiar with the disease.
Establishing a treatment plan and updating it frequently can help ensure your child gets the best care possible while at school or daycare.
What is a treatment plan?
A treatment plan contains a description of your child’s disease, along with its symptoms. The symptoms listed should be both those that your child currently experiences, and any that teachers or caregivers should be watching for.
A treatment plan also contains information about how the disease is being treated — what medications your child requires, what dosage, and how often. Make mention, too, of what side effects may be caused by each medication.
If your child is on a special diet, that information should also be in the treatment plan.
Likewise, list the protocol that you have also discussed with your child’s school or daycare in the event of an emergency. Because instances might arise where your child’s doctor or doctors should be contacted directly, include their number in the plan as well.
Who should have a copy of your child’s plan?
The school or daycare administration should be made aware of your child’s condition, and have a copy. Your child’s individual teachers or caregivers should also have access to the treatment plan.
How frequently should the plan be updated?
Every time you meet with your child’s physician, go over the treatment plan and see what needs to be updated. Are there new medications that your child needs to be taking? Are there new recommendations?
It is always good practice to file a new treatment plan after each doctor’s visit, whether or not changes have been made. If there are changes, be sure to update the treatment plan with your child’s school or daycare, and to discuss these changes with your child’s primary teacher or caregiver and others of importance.
Last updated: August 23, 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.