Living With AADC Deficiency
Working with a dietitian as part of a treatment team can be helpful in managing AADC deficiency.
Registered dietitians can work with patients and their parents or caregivers to design a meal plan that helps them get the nutrients they need. A balanced meal contains proteins, fats, carbohydrates, minerals, and vitamins. Patients with AADC deficiency may have specific nutritional needs that should be discussed with their treatment team.
It is important for children with AADC deficiency to have a positive school experience, interact with peers, and develop social skills in addition to academic achievements.
Parents and caregivers should work with school staff to develop an individualized education plan (IEP), which outlines what accommodations the child will need and how the school and parents will work together to meet them. The IEP is a dynamic plan; it should be updated frequently, as the patient’s needs change over time.
Erratic sleep patterns, difficulty falling asleep, and a lack of energy due to insufficient sleep are often traced to symptoms of AADC deficiency. Patients with AADC deficiency have low levels of serotonin an dopamine, both of which are regulate the sleep-wake cycle.
A number of strategies can help AADC deficiency patients combat sleep problems, including taking melatonin supplements (if prescribed by a doctor), relaxation techniques, and maintaining a regular sleep schedule.
Aids and Adaptations
AADC deficiency is characterized by low muscle tone and muscle stiffness that makes movement difficult. It can also cause fatigue, muscle spasms, and uncontrolled movements.
As a result, people with AADC deficiency may need to rely on a variety of aids and adaptive devices to help them get around and perform everyday tasks. These may include orthotic devices such as braces, mobility devices such as walkers, or assistive technology such as apps that help them do certain tasks.