Taking care of a child with aromatic l-amino acid decarboxylase (AADC) deficiency can be overwhelming for parents or caregivers. But there are some ways you, as a family member, can help the primary caregivers of a child with AADC deficiency.
Why it’s important to help
Taking care of a child with AADC deficiency can be very stressful and exhausting. Caregivers are at risk of developing depression and caregiver burnout/fatigue. In such cases, it may be hard for them to take good care of the patient. There are a number of ways you can help them avoid burnout.
Help with everyday life
Patients with AADC deficiency have a range of symptoms that can make everyday life challenging for caregivers.
For example, patients can have trouble falling asleep or erratic sleep patterns, most likely due to reduced amounts of melatonin. Patients also sometimes have seizures during the night. Because of these issues, caregivers may experience a lack of sleep themselves. To help them get more sleep, you could offer to watch the child while the caregiver takes a nap during the day. If you live with the caregiver, it may help to stagger sleep schedules so that everyone has the opportunity for sufficient sleep.
Another common group of symptoms that patients with AADC deficiency experience are related to the muscular system, resulting in issues such as low muscle strength (hypotonia) and movement disorders. Because of this, many normal activities, such as getting dressed, walking, and feeding themselves may be difficult for children with AADC deficiency to do without help. Due to muscle weakness, many patients may need assistive devices such as orthotics or mobility aids like wheelchairs. You can help the caregiver by putting on or setting up these aids.
Children with AADC deficiency may have a hard time chewing and swallowing food. If the child is not able to eat enough to keep them healthy, he or she may need a gastrostomy tube (G-tube) for feeding. You can offer to help feed the child to allow the caregiver time to eat their own meal without interruption.
Finally, you can assist with chores and tasks around the house. For example, you could help with shopping, preparing meals, and cleaning. You might also be able to drive the child to school or daycare.
Social and emotional support
Caregivers often feel overwhelmed and isolated, which can result in anxiety and depression. Keeping in touch with them so they don’t feel isolated can be very helpful mentally and emotionally.
Encouraging the caregiver to attend social outings and offering to watch the patient while they are away can help reduce their stress level.
You also can encourage them to seek help through a support group such as the AADC Research Trust or the Pediatric Neurotransmitter Disease Association, or to talk with a psychotherapist to help them deal with the emotions they are experiencing.
Last updated: Oct. 7, 2020
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.
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