When Ava Pennycook has an appetite, family members drop whatever meal plans they have to get whatever food item Ava wants.
Lately, that has been high-sodium foods. Chipotle and Noodles and Company have become her go-tos for takeout.
And that’s OK. It is actually what the Janesville teen’s doctor ordered.
The 16-year-old Parker High School student has made salt tabs, water, compression socks and several medications part of her daily regimen about nine months after she first tested positive for COVID-19.
Ava is considered a COVID-19 long-hauler, and her haul has gotten even longer since she spoke about her experiences with COVID in September.
That’s because she was recently diagnosed with postural orthostatic tachycardia syndrome, known as POTS.
It’s a chronic autonomic nervous system disorder that affects the bodily system that regulates heart rate, temperature, sweating, digestion, blood pressure, immune system, fight-or-flight response and more.
POTS can be triggered by several things, a common one being viral infections.
Ava’s doctors believe her coronavirus infection triggered POTS, a condition that might ease in a matter of years or stick with Ava forever, said her mother, Amy Pennycook.
COVID-19 commonly causes severe illness in people who are elderly or have preexisting health conditions. Ava was neither elderly nor suffered from chronic conditions when she tested positive.
Amy and her husband, Scott Pennycook, want people to know that children such as Ava can become COVID-19 long-haulers or develop secondary health conditions.
They said their daughter’s condition has flipped their lives upside down.
“People don’t understand,” Amy said.
Some days Ava feels OK, but many days she does not. Sometimes her condition changes by the hour, Amy said.
In Wisconsin, 842 children younger than 19 have been hospitalized because of COVID-19, according to data from the state Department of Health Services.
That number doesn’t take into account children such as Ava who are suffering but were never hospitalized.
Salt, water and prom
Since she contracted COVID-19, Ava has experienced fatigue, shortness of breath, chest pain, hot flashes, exhaustion, body aches, congestion, nausea, loss of appetite, dizziness, nose bleeds, memory loss and confusion.
Her symptoms improved briefly in fall, but around Christmas she “hit a complete wall,” Amy said.
Ava couldn’t muster the energy to play games with her parents on Christmas or New Year’s Eve. When she returned to school, she couldn’t get through the day without falling asleep, her mother said.
What was most concerning was that Ava had almost no appetite.
She was diagnosed with POTS on Feb. 15.
Around that time, she started taking four or five salt tabs and drinking 80 to 100 ounces of water a day, Amy said.
Salt is recommended for POTS patients because it can increase blood volume, lowering heart rate and increasing blood pressure, according to POTS UK, an advocacy group.
Water similarly helps blood volume and blood pressure, according to the group.
Ava’s brain fog also has continued, and she often struggles with feeling overwhelmed. It’s a big change for a girl who used to juggle school and activities with ease, Amy said.
POTS most commonly affects women between the ages of 15 and 50. In some cases, it goes away. In others, it does not.
The idea that Ava could live with POTS forever scares her mother, especially as Ava reaches normal teen milestones such as learning to drive, shopping for a prom dress and going off to college.
Amy and Ava went shopping for Ava’s prom dress last week. Ava found her dress, but her mom worries about what that day might be like for her.
“She’s also planning on going to prom, so I am already saying prayers for a good day that day,” Amy said in an email.
There is an undeniable feeling of resilience around Ava when she talks about her condition.
She doesn’t lament her decision to participate next year in All Star Cheer, the competitive cheer team she has traveled the country with for years. When Ava talks about how her parents are only comfortable letting her drive short distances on good days, she understands why they feel that way.
Ava has boundaries, and she knows why they are important.
Getting the POTS diagnosis was a relief in a way, she said, because it meant having a better understanding of what was happening to her.
“POTS just made sense,” Ava said.
Ava was scheduled to receive her first dose of COVID-19 vaccine April 15, but that appointment had to be changed quickly.
The morning of her appointment, Ava’s doctor advised her not to get the vaccine that day because test results showed she has an adrenal gland deficiency and is not producing cortisol, Amy said.
Because of that, Ava’s immune system is in overdrive, so her doctor recommended against the vaccine.
It is too early to tell if the adrenal issues are caused by COVID-19, Amy said, but they add to the mounting problems Ava has been experiencing.
She currently sees a pediatrician, cardiologist, neurologist, gastroenterologist and has been referred to an endocrinologist.
“It’s just so frustrating,” Amy said in an email.
POTS is considered an “invisible disease,” Amy said, which makes it difficult for people to understand why Ava feels the way she does.
Ava doesn’t talk much to her friends about the disease.
“It’s a complex syndrome to talk about, and I think Ava is looking for some normalcy,” Amy said.
Amy says some days she feels really lonely, and she seeks comfort from Facebook groups filled with people who have experienced similar things.
“Her life has changed ... all our lives have changed,” Amy said. “It’s crazy how this has changed our lives.”