Aromatic l-amino acid decarboxylase (AADC) deficiency is an inherited disorder that affects the nervous system and hinders the ability of its cells to communicate with the body. It leads to a variety of symptoms, including severe developmental delay, weak muscle tone, muscle stiffness, and difficulty moving.
Symptoms can appear in the first year of life, and because AADC deficiency is so rare, many people are familiar with the disease. Catering to children with the disorder can be a challenge for schools and daycares but here are some tips that may help.
Build an individualized education plan
One of the first things that schools and daycare centers can do for a child with AADC deficiency is to develop an individualized education plan (IEP) together with the parents. The plan should answer questions such as: What accommodations will the child need? How will the school meet these accommodations to ensure that the child receives the proper education?
The IEP should be updated frequently to highlight what’s working, and what needs to change for the child to thrive in the classroom. Improvements and new symptoms should also be noted.
Keep the child’s treatment plan on file
Children with AADC deficiency should have a treatment plan on file with the school. A treatment plan contains a description of the child’s disease, its symptoms, as well as information about how the disease is being treated — what medications the child requires, and the dosage and frequency of use. Any side effects of medications should also be listed. If the child is on a special diet, that information should be in the treatment plan.
While teachers and caregivers may not need to know every aspect of the disease, they should be aware of the child’s current symptoms, what symptoms to look out for, and any medications that the child may need while in the classroom.
For example, some children with AADC deficiency experience epileptic seizures. Teachers and caregivers should be familiar with the symptoms of a seizure and the first-aid steps they should take if the child has one in their classroom.
Talk to parents on a regular basis
The school should keep in touch with parents on a regular basis and discuss things such as any new symptoms that teachers or caregivers may have noticed, or changes in the child’s behavior that parents may be unaware of.
Any changes to the child’s treatment plant or IEP should be discussed between the school or daycare center and the family of the child.
Last updated: Nov. 3, 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.