One morning in late October, David Henke woke up and his hands weren’t working as they should.
“I couldn’t hold a spoon properly, I couldn’t button a shirt, I couldn’t turn a key in a lock, kind of all those little movements with your hands that you really hold for acquired. I suddenly wasn’t able to do it, it was literally an overnight thing,” he said.
For the past few weeks, her family had been battling a wave of RSV, a common respiratory illness. His six-month-old daughter, Norah, caught the virus at daycare and then passed it on to him and his wife, Leah. While RSV was worrisome, Norah recovered with a relatively mild case. And David and Leah were on the mend too.
That is, except for a tingling David felt in his hands and feet. At first he ignored her, but then his hands wouldn’t work. And the feeling was starting to seep into other parts of her body.
It was the first symptom of Guillain-Barré syndrome, a neurological disorder that causes your immune system to attack your nerves.
“It’s basically an autoimmune attack on the peripheral nervous system,” said Dr. Jetter Robertson, a neurologist at M Health Fairview, where Henke also works. “The way he behaves is usually with a gradual course of weakness, often associated with sensory symptoms, but weakness tends to be the predominant component.”
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This weakness, or paralysis, often comes on and goes up, starting in the legs and working its way up, but can start and progress anywhere, Robertson said. It can also vary in severity.
“There is a very wide range of illnesses, from people with relatively mild courses who mostly have sensory symptoms without much weakness – are able to walk and continue to work with extra help – to very, very serious people” , he said, explaining that up to a quarter of patients “have to be put on a ventilator at the worst of the disease. And even with all of our maximum medical therapies, there is still a death rate of around 5%.”
Although the exact cause of GBS is unclear, some patients report experiencing an infection in the weeks leading up to illness. Although the link between the two is still unproven, Robertson said one hypothesis is that there is something about this virus – like an abnormal protein – which, in someone who is susceptible to it, triggers this answer.
“Something about this virus is like myelin, the sheath that covers your nerves,” he said. “And so when it goes to attack the virus, your immune system does what it’s supposed to do. [Then] suddenly your immune system that previously didn’t recognize your nerves as abnormal now thinks your nerves are still this virus and now causes this immune attack.
Once David started to feel the weakness spreading, the Henkes decided it was time to go to the hospital. He spent several days at the University of Minnesota Medical Center, and after extensive testing, doctors confirmed it was GBS. Henke was given immunoglobulin treatment and started occupational therapy to treat the symptoms.
While his case was quite mild and remained in his hands and feet, the effects were still difficult, such as when trying to dress Norah.
Sometimes he wondered if he could hold her safely. “Do I trust my hands enough to hold my daughter? For example, if she suddenly moves or rocks back and forth – which small children can do a lot – will I have the reflexes and the strength in my hands to hold her and not drop her?
Henke is now back home and says that after a few more weeks of occupational therapy, he should hopefully be able to regain his strength and movement.
While the syndrome itself is extremely rare – only about one in 100,000 people get it each year – experts say the potential to be triggered by RSV is even rarer.
“Virtually all viral infections can result in Guillain-Barré. It’s just that RSV, boy, is rare. It’s really rare,” said Dr. Nicholas Lehnertz, a medical specialist with the Minnesota Department of Health. “But we see [GBS in] others too. We see it in the flu, we see it in SARS-CoV-2. It’s been reported with other things, like the Zika virus, and things like that.
Lehnertz recommends if you’re worried, make sure you’re up to date on the flu and COVID-19 booster shots, which can protect against long-term effects.
In the end, says Henke, if RSV did because of the syndrome, he’s glad it was him who caught it and not his daughter.
“I prefer to be the one with the wrong things. And Norah, she doesn’t deserve this and doesn’t need to go through this.
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