Overcoming excessive drooling through strength and awareness
How we're managing this symptom of our daughter's AADC deficiency
Our daughter, Rylae-Ann, has journeyed from fighting for her life to living out a childhood dream. While she still faces some challenges, they pale in comparison to the battles she once fought.
Nearly five years have passed since she received gene therapy to treat her rare neurotransmitter disease, aromatic l-amino acid decarboxylase (AADC) deficiency. Today, we have the privilege of addressing some of the more minor issues that were once overshadowed by greater concerns.
When Rylae-Ann was just a baby, her parents began noticing excessive drooling. (Photo by Richard E. Poulin III)
From the time she was a baby, Rylae-Ann had noticeable excessive drooling. My wife, Judy, and I initially dismissed it as typical for her age. But once we received her AADC deficiency diagnosis, her symptoms began to make sense.
One of the severe symptoms of AADC deficiency is low muscle tone, or hypotonia. This condition limits movement and affects other bodily functions, resulting in excessive sweating, droopy eyelids, and excessive drooling, medically known as hypersalivation or sialorrhea.
Given the more pressing issues at the time, Judy and I simply dressed Rylae-Ann in cute bibs, quick-drying shirts, and incorporated some exercises. We managed her drooling with frequent shirt changes and dabs with a plush cloth. The drooling didn’t bother her, so it was a lesser concern on our long list of worries.
However, now that she has made such remarkable progress and is thriving as a typical first grader, the drool-stained shirts have become more noticeable in the classroom. Judy and I decided it was time to take a more active and systematic approach to address this issue.
Speech exercises
Judy began working with Rylae-Ann early on, using exercises recommended by a speech pathologist. These exercises, while aimed at improving her speech, also help with drooling. In our experience, time and patience are required, as results are not immediate.
The most effective approach for Rylae-Ann has been oral placement therapy (OPT). OPT is a speech therapy that combines auditory, visual, and tactile stimulation to the mouth and muscles that produce speech. Though it seems simple, speaking involves a hundred muscles from the core to the nasal cavity. It’s no wonder that speech exercises would also help to reduce drooling.
Core strength
While Rylae-Ann continues to work on her excessive drooling, her parents use stylish accessories to accommodate her symptoms. (Photo by Richard E. Poulin III)
Rylae-Ann’s physical therapist suggested we continue building her core strength. Weak muscle control in the abdomen, neck, and head causes the head to tilt downward, which leads to saliva pooling and eventually escaping the mouth instead of being swallowed. By focusing on exercises that develop good posture and positioning, Rylae-Ann will reduce her drooling.
Building awareness
We are also helping Rylae-Ann become more aware of her drooling. We use subtle cues, such as tapping our chin or making a short slurping sound, to remind her to swallow when we notice dribbling. She noticeably becomes frustrated or embarrassed each time we point it out, so the subtle cues are a mutually accepting way to give feedback.
Another way of building awareness is through food. When consuming ice, sour drinks, or slightly spicy food, Rylae-Ann quickly notices the tingling sensations in and around her mouth. Our go-to food choices have been popsicles, lemonade, and salsa. As she eats, we play with the food and discuss her feelings. We each take turns touching the food with our tongue, using a cotton swab on our lips, or placing it in our mouth. Taking time allows for more reflection and awareness.
While other approaches, like medication or surgery, were suggested, we didn’t feel they were suitable for Rylae-Ann. Her drooling is more of an annoyance for us than a serious issue for her, and we prefer to focus on therapies that integrate into our daily lives and support her overall development. In the meantime, she has cute handkerchiefs that reflect her style to wipe her chin as needed as she continues on the path of success.
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.
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