What looked like allergies was actually a PWS symptom we didn’t know about
For weeks, we'd noticed what seemed like increased congestion and coughing
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My 4-year-old daughter, Emerson, and I were marveling at a tank of seahorses at the aquarium in San Diego recently when she erupted into a coughing fit, prompting me to pull her hand out of her mouth for what felt like the 27th time that afternoon.
She’d been doing it all day, fingers digging around like she was trying to grab the cough out of her own throat, subsequently gagging herself.
I could tell she was starting to feel miserable, so we made our way over to the stroller area to grab her cup of water and gather our things to leave. It kept happening throughout the walk back to the car. After strapping her in, I squeezed into the middle of the back row, sandwiched between two car seats. My friend’s daughter was on my other side, trying to get me to read her book, while the battle of pulling Emerson’s hands from her mouth raged on.
Another coughing fit started and I pulled her hand out again, only this time I was struck by what came with it. Her saliva was thick, stringy, and frothy with a consistency more like mucus. Something was off. This no longer seemed like just congestion.
Chalking it up to allergies
For a few weeks before the trip, we’d noticed what seemed like increased congestion and coughing. Emerson has seasonal allergies, and we figured it was some combination of that and the swing between humid air outside and dry air conditioning inside. We gave her natural decongestants, some cough medicine, and kept an eye on it.
Over the long weekend in San Diego — a trip with two of my closest friends and one of their toddlers — it got noticeably worse. Emerson is normally great about drinking water throughout the day, but she seemed abnormally disinterested on the trip. She was putting her hands in her mouth constantly, coughing, and drooling more than usual. I chalked some of it up to travel, a new environment, being off her routine. It wasn’t until that moment in the car, leaving the aquarium, that I started wondering if it could be more than just congestion, or something else entirely.
Learning something new about PWS
Once we got back to the Airbnb, I started digging online. Thick, sticky saliva turned out to be a documented issue in Prader-Willi syndrome (PWS), and, somewhat counterintuitively, it’s tied to reduced saliva production, not to too much of it. Salivary flow in people with PWS can run at approximately 20% of typical levels. It’s a specific kind of dry mouth, one that doesn’t feel dry at all, just sticky, gummy, and uncomfortable, because what little saliva does get produced comes out thicker and more concentrated than usual.
That matched what I’d noticed in the car. Combined with her hypotonia, her body seemed to be working harder just to manage the buildup, which explained both the coughing fits and her constantly trying to pull it out with her hands.
We also learned that the saliva itself is more acidic than typical, packed with concentrated proteins that can wear down tooth enamel over time and potentially cause other oral health issues.
One thing Emerson’s doctor flagged for us: Decongestants can actually worsen dry mouth. If you or a loved one are experiencing similar challenges, please consult your physician.
The last few weeks completely reframed themselves once I understood what was going on. This wasn’t a lingering cold. It was a clinical symptom of PWS that my husband, Jamie, and I simply hadn’t come across yet.
What seems to be sticking with me isn’t the symptom itself. It’s how close we came to just continuing to treat it as allergies because that was the reasonable explanation. It would have been easy to keep giving her decongestants through the whole season and never once question it. What changed our course was noticing, really noticing, when something seemed off.
Now, we’re looking around for a new dentist who specializes in treating kids with special needs, and we’re specifically hoping to find one with some familiarity with PWS, since salivary issues like this tend to carry dental implications, too. We’ll also be offering water more insistently.
This experience wasn’t just a reminder of how important dental care is for those with PWS; it was also another reminder to pay attention and remain curious about how their bodies work a little differently. Now that we’re in the know, we’ll be able to recognize the signs if our 1-year-old son, Ellis, experiences similar challenges in the future.
Four years in, and there’s still so much to learn about PWS.
Note: Prader-Willi Syndrome 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 Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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