How Anxiety Affects Our Daughter With AADC Deficiency

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by Richard E. Poulin III |

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When a parent sees their child gripped with fear or anxiety, we immediately take action to reassure them that everything is all right and they are safe. However, with children who have aromatic l-amino acid decarboxylase (AADC) deficiency, this is not easily remedied. It is an issue that we constantly monitor. Anxiety was reported as a common problem for people living with AADC deficiency, and it is something my wife, Judy, and I see every day.

New faces and new places

When our daughter, Rylae-Ann, was just a newborn, seeing any new faces triggered screaming. At first, this was cute, and was likely more related to her being a newborn than having AADC deficiency. However, it continued. When she was 3 months old, we realized oculogyric crises (OGCs) could be triggered by anxiety related to new faces or places.

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The Medicine of Sleep

We learned to live with OGCs by managing her anxiety. We created a routine. We went new places slowly and meaningfully. If we began a new activity, we made sure it was beneficial and accommodating. For example, as we incorporated water therapy slowly but consistently, our daughter’s anxiety level dropped, and she enjoyed the beneficial activities. We also spoke with therapists and instructors about the importance of not switching whom our daughter would see.

anxiety and AADC deficiency | AADC News | Rylae-Ann and her mom sit on the grass near the beach and do stretching exercises together.

Rylae-Ann and her mom do stretching activities at the beach to adjust to new sensations at the same time. (Courtesy of Richard E. Poulin III)

High sensory inputs

We took our daughter to environments with lower levels of sensory input. We avoided crowded and noisy locations. Instead, we sought out quieter places that were less crowded. This also gave us space to work with our daughter and care for her. We enjoyed going to parks and beaches together. There, we could introduce her to the feeling of the breeze flowing across her skin, the sand seeping between her toes, and the touch of the blades of grass. These small sensory inputs are necessary for all children, but our daughter required more time to adjust to these new sensations. Rylae-Ann didn’t stop screaming about sand until she was 2.

We applied this to our home and especially our daughter’s rooms. My wife and I have a background in early education and play-based learning. We designed our classrooms with a Reggio Emilia approach that seeks to create an environment that plays an integral role in the learning process, where walls aren’t just for random decorations. In the Reggio approach, the environment is even referred to as the “third teacher.”

This approach is beneficial to all young learners, but is especially useful for those in the AADC deficiency community. The materials in Rylae-Ann’s room were thoughtfully incorporated. Items were slowly added and introduced if they supported her creativity, thinking, exploration, and movement.

anxiety and AADC deficiency | AADC News | Rylae-Ann cries and screams while lying down next to a pink stuffed toy.

Creating a supportive environment is crucial to learning, because even a new toy could cause high anxiety for Rylae-Ann. (Courtesy of Richard E. Poulin III)

Teaching others

Despite going to private, low-sensory areas and often opting to stay home, some still needed to come into contact with our daughter: new medical staff, therapists, teachers, nannies, family, friends, and the list goes on. Even though we as parents were very private while we worked to understand what was happening, we still required many new faces to help us along this new journey.

My wife would phone ahead to explain. Many children’s services had questionnaires designed to support each child. We took our time to efficiently explain our daughter’s behavior and provide specific strategies to help support them in caring for her. For example, we would tell them soft cheering without clapping was more motivating than loud cheering and clapping.

On the way, Judy was very detailed in explaining where we were going and what we were doing. Even though our daughter could not respond, we knew she was listening, and it helped her to understand what was happening.

Once we arrived, we did our best to introduce Rylae-Ann to the people and help her feel safe in the new environment. We always did our best to ensure she left with a smile, and talked with her on the way home so that she would hopefully remember these positive feelings when we returned.

anxiety and AADC deficiency | AADC News | A therapist holds Rylae-Ann in an office.

Taking time to introduce Rylae-Ann to new therapists allowed her to be calmer and more prepared to receive care. (Courtesy of Richard E. Poulin III)

The cause

Increased anxiety is associated with AADC deficiency because neurotransmitters send signals to the brain cells on how to communicate with the body. The lack of the AADC enzyme means that necessary neurotransmitters, dopamine and serotonin, are severely affected.

Without these crucial neurotransmitters working properly, children experience anxiety attacks. These are extended periods of time in which the child experiences severe anxiety, which may be exhibited as excessive sweating, trembling, shortness of breath, increased heart rate, and intense fear. By removing triggers and being observant of anxiety attacks, caregivers can help children cope with these symptoms of AADC deficiency. Long-term benefits include minimizing anxiety and providing coping strategies so that the symptoms do not intensify, and are instead minimized.

Find beneficial locations that support you and your network in best caring for your child. Talk with the people at the venue to help them be successful. Talk with your child before, during, and after the visit. When possible, be consistent about visiting the same places and meeting with the same people.

These steps can help to minimize anxiety, but we all find different strategies. Please share any ideas that have been successful for you in the comments below.

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Note: 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. The opinions expressed in this column are not those of AADC News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.