We found out that the CDC knows virtually nothing about AFM (the first sentence on their “At A Glance” page states CDC is concerned about AFM, a serious illness that we do not know all the cause of or how to prevent.); we have never been more acutely aware of how far medicine still has to go than when receiving Love Bug’s diagnosis. There’s no concrete reason why this happened to her, just as there’s no defining factor among all the children it happened to in her cohort. Likewise, there’s no concrete tried and true treatment, because the number of cases the United States has seen is in the hundreds – literally, less than a thousand cases.
Why did this happen to Love Bug, when so many others who contract EV-D68 simply experience flu-like symptoms and/or respiratory infections?
The attending physician, Dr. G, surmised that the enterovirus reacted so aggressively because Love Bug’s immune system was already compromised – beginning in January or February of 2016, she’d had recurring respiratory issues whenever she got a cold. Our pediatrician hadn’t been concerned, citing that many kids experience childhood asthma, and often grow out of it. She was even less concerned, because Love Bug never had wheezing or other respiratory distress unless she was already congested. We never thought anything of it, beyond getting into a routine of putting her on an inhaler whenever the symptoms appeared. Still, this is only conjecture – I doubt we’ll ever actually know definitively why an otherwise healthy toddler went down for a nap one afternoon, and awoke unable to use her dominate arm.
As there is no real precedent for treatment of AFM, the treatment prescribed was something used in cases of other, more common neurological disorders. We stayed in the hospital for three more nights – Thursday, Friday, and Saturday – while Love Bug underwent IVIG (intravenous immunoglobulin) in the hopes that the wide range of antibodies would encourage healing of the nodules on her spine or, at the very least, inhibit further damage. We had to hold her down and sing “Let It Go” while she sobbed each night as the nurses tried to give her a fever-reducer and benadryl, and then flushed her IV site with saline, before finally hooking her up to the IVIG. I think one night she fell asleep right away, and the other nights we weren’t so lucky, especially with the constant beeping of the monitors and the nurses checking Love Bug’s vitals every couple of hours. She was terrified of the blood pressure cuff in particular, by the end.
Dr. G also suggested administering Prozac – an experimental option – as some studies with mice had shown nerve damage repair. We had nothing to lose, so agreed, and Love Bug took that for two weeks as well. The only real side-effect we observed was that she was constantly drenched in sweat to the point that we were giving her daily baths; thanking the universe for small favors, she didn’t appear to be miserable as a result.
To top everything off, during our in-patient stay we were confined to our hospital room. Or rather, Chris and I could come and go as we pleased, but Love Bug was essentially in quarantine. With a virus as highly contagious as EV-D68, no one was taking any chances on it spreading. To that end, any nurse or doctor who visited with us had to wear a respiratory mask, gloves, and a full paper gown over their scrubs. All Love Bug wanted to do was go for walks around the hall, and it killed us a little more each time we had to tell her no, especially since she couldn’t understand why.
There was no miracle improvement by the time Love Bug completed her treatments. Honestly, I don’t recall if there was any physical improvement at all. I know both Chris and I were holding out varying degrees of hope that she’d improve overnight – it was highly improbable but even the slightest possibility gave us hope – and when that didn’t happen, instead of not knowing what to do with ourselves and despairing, we shored each other up and prepared to face the journey ahead. We had to believe the worst was behind us, and so we rallied. There was just no other option for us. We were united in doing everything possible to ensure Love Bug had her best chance of recovery, while understanding that she may never regain any use of her right arm. We were determined to stay positive, but realistic.
I’m honestly not sure any of it helped; everything was so speculative in nature, it’s hard to tell what’s responsible, the treatment or, simply, time. I do know it was worth it, though, because by the end of our stay, even though her right arm remained unchanged, we had our sassy, feisty, active, opinionated little girl back.