This isn't my story.

It belongs to my daughter, Georgia. Someday, when she is well enough, I hope she will tell it in her own words. For now, I will do my best to share it through the lens of her mother, confidante, cheerleader, and advocate. 

                

Georgia became ill with the Omicron variant of Covid-19 the day after Christmas in 2021. She was only fifteen at the time, too young to receive the Covid-19 vaccine booster that would be approved by the FDA for her age group only a few weeks later. She was moderately miserable cooped up in her room for a week. We laughingly dropped off her meals and Covid tests on a rolling tv stand we dubbed the alter of doom positioned just outside her door, not really worried. 

All the news reports assured us that kids breeze right through a Covid infection and she seemed to be doing just that. She had a sore throat for a few days and ran a fever for less than 24 hours, so we were relieved when the virus ran its course fairly quickly. She joined us for New Year's Eve board games via Facetime on my laptop and her antics had us in stitches as she tried on every Memoji character throughout the evening and cracked endless jokes.



                               

We let her leave her room with a mask on after a week, but she continued to complain of fatigue, so still spent a lot of time in bed. As winter break came to a close, the school nurse cleared her to return to school, but she still wasn't feeling strong enough. We let her stay home longer to rest, but as the days rolled into two weeks, we began to pressure her to return. I remember I picked her up early the day I convinced her to tough it out; in the car on the drive home she told me her head was pounding and her leg muscles ached with a heaviness that felt like she had run a marathon.

I began reading about Long Covid that afternoon. What I learned was terrifying. There were literally hundreds of manifestations associated with the post-viral syndrome, and the most common matched her descriptions perfectly: crushing exhaustion exacerbated by the slightest exertion, pain and body aches, brain fog, headaches, dizziness, and a rapid heart rate that left her feeling faint whenever she stood up. Very few doctors understood what this was and even the latest research was vague and undecided. The only consensus was that there was no approved treatment and no answers yet.

For adults with Long Covid (or LC), the outlook was bleak, but the hope of a clinical trial was at least something. For kids, there was nothing. We live in Portland, so I searched for a Long Covid clinic for pediatric cases and found one at Oregon Health and Science University. Unfortunately, patients need to have symptoms for three months before meeting the diagnostic criteria for Long Covid when the clinic would agree to schedule an appointment. Our hopes were so high when that day finally arrived, only to be dashed when the myriad of specialists the clinic referred us to had nothing to offer beyond advice to drink more water and increase her salt intake. We waited another three months to see one of only three pediatric rheumatologists in the entire Portland metro region (all of whom are in the same group). After an hour long interview, we were hopeful this time we would get some answers, only to be devastated by the uneducated response: 

"Long Covid isn't real, kids certainly don't get it, and she just needs to practice better sleep hygiene and this will go away."

She didn't even bother to draw her blood.