Author Archives: Richard Poulin III

Tips for Administering Medication to Children

During our family’s diagnostic journey to find answers, we were prescribed various medications. After discovering that our daughter, Rylae-Ann, had aromatic l-amino acid decarboxylase (AADC) deficiency, we hoped a new set of medications would alleviate her symptoms. But administering her medication has never been…

How Friendships Changed After Our Daughter’s Diagnosis

Things change, there’s no denying that. But when you’re handed the unexpected news that your baby, who was born healthy, has a debilitating disease, change can be life-altering. But change isn’t always bad. One of the first changes that came our way after our daughter Rylae-Ann’s diagnosis was new friendships.

How We Approach Teaching and Learning With Our Daughter

Once we started joining aromatic l-amino acid decarboxylase (AADC) deficiency communities, families began reaching out, offering support, and providing information. As our knowledge about the disorder grew, my wife and I began applying what we knew about education. Although we are teachers, we never sought to teach other families. Instead,…

How Anxiety Affects Our Daughter With AADC Deficiency

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…

Preventing Hip Dislocation in Children With AADC Deficiency

We struggled to comprehend the news and reeled from the shock when our daughter, Rylae-Ann, was diagnosed with a rare disease known as aromatic l-amino acid decarboxylase (AADC) deficiency. We tried our best to learn about interventions and proactive steps. We concentrated on improving her eating to…

The Importance of Backing Up and Organizing Digital Medical Records

Our daughter, Rylae-Ann, has medical records scattered around because of multiple visits to the hospital, traveling to meet doctors, and moving homes. Those afflicted by aromatic l-amino acid decarboxylase (AADC) deficiency will benefit from keeping their medical records readily available and organized, as they deal with many…

Finding Answers Through Genetic Testing

Genetic testing has gained much attention thanks to commercial products that provide people with details about their family’s origin. With a simple home kit, you can mail off samples and receive materials about your DNA. However, for families experiencing medical diagnostic challenges, DNA testing offers hope for answers, as it…

The Medicine of Sleep

Before our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, the telltale sign that something was amiss were the cyclical spells that began at 3 months old and occurred every three days. We initially thought they were seizures, but later learned they were oculogyric…