Why common illnesses can look different with Prader-Willi syndrome
Our son, Ellis, recently came down with hand, foot and mouth disease
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I’m happy to report that surgery for our 1-year-old son, Ellis, went about as well as we could have hoped.
Going in, we were told it could be the first of many, depending on what the surgeon found. Instead, the doctor was able to do everything needed in one go, which means no subsequent procedures at this time. The news definitely lifted some weight from our shoulders.
To see him after, though, you’d never have guessed Ellis had surgery. He made recovery look like a breeze. He was just as happy and chipper as always, and the only thing that seemed to frustrate him was not being able to sit up more than necessary for over a week. After working so hard to learn to sit on his own, that was a tough ask for a 1-year-old.
Why illness can hide in PWS
I’m grateful for how smoothly it went. A high pain threshold is common in Prader-Willi syndrome (PWS), which means how a kiddo looks doesn’t always match what’s happening in their body. That came up again, shortly after his surgery, in a much more ordinary way.
Typically, pain and an elevated temperature are pretty good indicators of illness. With PWS, neither is guaranteed to show up. A high pain threshold can hide an injury or an infection. For example, about a year ago, our daughter, Emerson, smashed her fingers in the door on our TV stand and responded by simply stopping to examine her hand. We could tell she felt discomfort, but there were no tears or pained cries.
Temperature can also be an unreliable indicator. In PWS, a normal temperature isn’t necessarily a fixed number and can be above or below the average of 98.6 F, meaning a fever can be absent or easy to miss, even with a real infection.
A whirlwind in Georgia
Ellis started school recently, and on his first day, he was exposed to hand, foot, and mouth disease. We learned about the exposure the day before my brother’s wedding, when we were already in Georgia with my family. We let our family know about it, and that he wasn’t showing any symptoms at the time. He was acting completely normal, and we were carefully watching for signs like a fever, crankiness, or discomfort.
On the day of the wedding, he didn’t have any symptoms either, apart from being a little more tired than usual. It was hot, in the mid-80s, and Ellis typically runs hot anyway, so we chalked it up to the heat. It was consistent with his experience over the summer; if he’d been outside during the day, he’d be a little more tired than normal. His temperature was right around 99 F, which isn’t unusual for him.
But the day after the wedding, there it was: a rash. Our first thought was heat rash. It seemed consistent with one he’d gotten over the summer, and it started on his torso, groin, and bum. Then it started to spread down his legs and onto his hands and feet. He was still having plenty of wet diapers, a good sign that he was staying hydrated.
From there, it all felt like a whirlwind. With a flight home scheduled, we decided we needed to visit the emergency room, and being so far from home made it nerve-wracking. We wanted to confirm what we were dealing with, rule out something more serious like measles or chickenpox, and find out if it was safe to fly or whether we should drive so we didn’t risk exposing anyone else.
It was hand, foot, and mouth, and we ended up driving home, which was an extra headache we hadn’t planned on.
Ellis is doing well. He’s healed beautifully from surgery, and his rash has gone away. He’s very excited to be back to sitting up and bum-shuffling around.
Reflecting on it now, we never saw anything until the rash, apart from a little extra tiredness that the heat easily explained. There wasn’t an abnormal temperature, he showed no signs of pain, and he was largely unbothered.
What I keep coming back to is how calm Ellis was through it all. He took all of it in stride. That’s one of my favorite things about him, but combined with a high pain threshold and an unreliable “normal” temperature, it can also make him harder to read. We’ll be keeping a close eye out as we get further into cold and flu season.
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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