In mid-March, Amy Thompson’s daughter, Amber, called her from a Starbucks shift and told her mother she felt a tickle in her throat that she couldn’t get rid of. In just hours, the college freshman had a fever and a constant cough. After some difficulty finding a site to take her, Amber proved positive for COVID-19.
Amy took care of her daughter as much as possible, sometimes putting earplugs on at night so she could rest while her eldest child coughed and coughed. She waited for Amber to recover.
Six months later, that still hasn̵
“We’ve seen that I can’t tell you how many different doctors. “She has been hospitalized five times in four different hospitals because I just keep looking for people who can help us,” she said. “She saw a cardiologist, she went to see a doctor for infectious diseases, we just saw a rheumatologist. They admit that this is something post-viral thing that is happening. “
But none of them have been able to help so far.
As the COVID-19 pandemic progresses, “long hauliers” have gained more attention, breaking the story that in all but the most severe cases, the virus usually goes away in two or three weeks. In support groups for “long COVIDs” and an increasing number of articles and personal essays, long-term carriers describe an illness that has saddled them with a number of physical and mental symptoms for months.
But what is then? Why are some people affected by symptoms that they attribute to the coronavirus for weeks and months, while others are not? How common is this experience? And what about children who have been largely spared the worst results of COVID-19, but whose lives can be hampered by these possible long-term effects? What does the “long COVID” look like to them – and how do parents try to help their children get answers?
“I would say we know very little at the moment,” said Dr. Sam Dominguez, a pediatric infectious disease specialist and medical director of the microbiology lab at Colorado Children’s Hospital. “What we do I know that most children recover after their initial illness and do well … but we don’t do well with this idea: “Do some children have long-lasting, permanent symptoms?”
“It’s obvious,” said Dr. Yvonne Maldonado, a professor of pediatric infectious diseases at Stanford University Medical Center and chairman of the American Academy of Pediatrics’ Infectious Diseases Commission.
But it is not clear what causes this “something”.
Coronaviruses are not thought to be latent viruses that incorporate into human DNA and stay with them, like the chickenpox virus, Maldonado said. Most people will “clear” the virus from their bodies, but the timing may vary. Some people can take months, she said, for unclear reasons.
“The other possibility is that it’s a reinfection, which is probably not so likely, or it’s an immune, long-term systemic response to whatever the virus causes,” Maldonado said. “I think that will be the most likely reason to see these ‘long carriers’, but we have yet to find out.”
“[My daughter] has been ill and excluded for nearly 150 days and we have no real guidance from medical professionals who have first-hand experience with this disease. “
– Kate, mother of 12-year-old “long carrier”
The relative novelty of COVID-19 – and the experience of long-haul carriers – makes finding appropriate care deeply disappointing, if not impossible, as parents and children jump from one type of doctor to another. And it is important to understand the full range of possible outcomes for children infected with the virus, even if longer-term, post-viral complications are relatively rare.
“[My daughter] has been ill and excluded for nearly 150 days, and we have no real guidance from medical professionals who have first-hand experience with the disease, “said Kate, a 35-year-old from Massachusetts who chose to use only her own name.
Her 12-year-old primary care physician is “wonderful,” but she has no idea how to treat the child’s symptoms, which include sudden, four-day bouts of fever, nausea, shortness of breath and tachycardia that cause her heart rate to jump.
“As we speak, she has 100.6 fever and woke up in tears [with] severe neck pain, ”said Kate.
Of course, stories from pediatric long-haul carriers contradict what is usually true of children and COVID-19, which is that more serious outcomes – namely hospitalization and death – are unusual. According to the latest data from the American Academy of Pediatrics, which is in fact the only organization monitoring national pediatric data on COVID-19, there are more than 500,000 cases of children in the United States or just under 10% of all COVID cases in that country. Most of them do not need hospitalization.
Multisystem Inflammatory Syndrome in Children or MIS-C is a rare syndrome that experts generally consider to be an overly strong immune response to the new coronavirus in some children, which can cause life-threatening complications, but is separate from these long-distance reports. . This is also a rarity.
“Children don’t get sick very often and usually don’t get sick when they get infected,” Maldonado said.
Long-distance parents like Amy don’t want to cause panic among other parents. She has seen in her own home – among her own children – the dramatically different paths that COVID-19 can take. When Amber falls ill, the family is advised to act as if they are also infected (they cannot be tested). In fact, Amy, her husband, and their other two children also developed symptoms, but after a few weeks, everyone was almost fine. Except for Amber.
Amber now spends most of her time in a wheelchair after developing severe pain in her arms and legs. She has seizures. She left college this semester and is no longer working.
Her parents are still looking for answers. No one was able to tell Amy what was happening to her daughter or why. No one has been able to tell her how this may be related to her daughter’s initial infection with the virus – or what can be done to help her recover.
“Although I know that what happened to my daughter is rare, it can happen,” Amy said. “She went from a very active and healthy 18-year-old girl to bed in the last six months.”