aDine Farneau was out doing chores one day in April 2021 when he felt excruciating pain, like “a hot knife stabbed in my back several times,” he said.
Aiden, now 13, spent most of the next eight months in so much pain that he couldn’t walk unaided, sleep through the night, or follow a full school curriculum. He also suffered from recurrent non-epileptic seizures related to his pain. Doctors near his Ohio home had no idea why Aiden was in so much pain or what to do about it; Some say he was having a psychotic episode or being abused at home, says his mother, Linda Farno. The first family leader came in July 2021, after they drove for 14 hours to a children’s hospital in Philadelphia. A doctor there mentioned that the pandemic appears to be driving an increase in pain disorders, giving Varnos evidence that COVID-19 may be to blame for Aiden’s pain. When, in December 2021, a doctor at Cleveland Rainbow Hospital for Children finally diagnosed Aiden’s disease. COVID longHe and his mother collapsed from tears of relief.
“Finally we had a doctor who believed us, supported us, and didn’t think my husband and I had done something awful to our child,” Farno says.
Aiden talks with his parents while sitting in a therapeutic hammock in their Ohio home. The swing helps Aiden manage some of his pain, allowing him to rest and recharge when he’s tired or in pain.
Julie Renee Jones for TIME
Families across the country are on an odyssey similar to COVID long for kids Care. As research accumulates and doctors learn more, many families interviewed by TIME say they have faced ignorance, dismissal or disrespect from doctors, leaving desperate parents to fight for their children’s recovery themselves.
“I’ve done more medical research than Johns Hopkins in the last two years,” joked Jennifer Serra, who has COVID and is the mother of a 12-year-old girl and a 9-year-old boy with the condition. I didn’t get any support [from the medical system]…we have decided not to listen to anyone and do our own thing now.” Sera has tried everything from melatonin supplements and meditation to massage therapy and Epsom salt baths to help relieve her children’s symptoms, but has yet to find something that completely cures them.
COVID-19 is often described as essentially harmless to children, and this is true Young people have very low odds of dying or being hospitalized after contracting the virus. But the prolonged COVID illness can affect children even after mild initial cases. It is not clear exactly how often this occurs.
One recent study Researchers in Germany compared children and teens who contracted COVID-19 to children who were exposed to the virus in their homes, but ultimately tested negative. With the exception of girls aged 14-18, children with COVID were no more likely to report moderate or severe persistent symptoms a year later. This finding should not rule out the fact that some children develop long-term symptoms after mild cases, but it does suggest that the percentage who experience this complication may not be huge.
Other studies They discovered that about 25% of children infected with COVID-19 had symptoms for at least four weeks. This is shy of the threshold at which it is Many experts will diagnose the long illness of COVIDThree months of unexplained symptoms but longer than would normally be expected for a ‘mild’ illness. And among children who were sick enough to be admitted to hospital with COVID-19, about 25% still had symptoms even after four months, According to a recent study.
Even if the exact spread isn’t known, “the takeaway is that this is a real problem,” says Dr. Daniel Platt, an infectious disease physician who works in the post-COVID clinic at Norton Children’s Hospital in Kentucky. “There are a lot of children who are suffering.”
One of the family’s dogs began alerting Aiden to an upcoming epileptic seizure. The dog became Ayden’s service dog and constant companion.
Julie Renee Jones for TIME
Fatigue, sleep problems and mood disturbances are the most common symptoms of COVID-19 in children. Suggest research, but this is far from an exhaustive list. Many children have digestive issues, chronic pain, accidents after physical or mental exertion (known as post-exercise distress), brain fog, nervous system malfunctions, and more.
These symptoms can turn a child’s life upside down. “The worst part is not being able to do the things I used to do,” says Daria Raker, 13, who has long had symptoms of COVID including headaches, stomach aches, brain fog, dizziness, malaise after exertion, and insomnia since February. . (She contracted COVID-19 and developed flu-like symptoms in December 2021.) Daria often doesn’t feel comfortable enough to see her friends or play her favorite sport, water polo. Her school has tried to accommodate her with a modified schedule, but Daria still often has to miss class because she doesn’t feel well or has doctor appointments, says her mother, Elham Raker.
There are more than a dozen pediatric COVID clinics spread across the United States, according to Evidence They are maintained by the Long COVID Families support group, but getting into them isn’t always easy. Platt says his team tries to see every patient within a week of receiving a referral, but other centers have much longer wait times.
The Long Children’s COVID Clinic at Children’s National Hospital in Washington, D.C., Director Dr. Alexandra Yonets says, has a waiting list of three to four months. This is “problematic,” Yonts says, but it’s the best she and her small team can do without additional funding. As it stands, they only see COVID patients one afternoon a week, and only because all the doctors happen to be free of other responsibilities during that time period.
Even specialist clinics are still learning a lot about pediatric COVID, which has been researched far less than adult COVID. Many researchers now believe the condition occurs in adults either because the virus remains in the body or triggers an abnormal immune response that can last much longer than in severe cases. But “there hasn’t really been a lot of solid data to tell us what is the organic or biological cause of long-term pediatric coronavirus,” Platt says.
Pediatricians often say that children are not just small adults; Their developing bodies and immune systems often respond to pathogens differently than adults do. for this reason, Research into the etiology of COVID for adults It does not always apply directly to children. However, there is some clue as to why some children develop long-term complications.
some studies She points out that children with pre-existing conditions — particularly allergic conditions such as eczema, asthma and food allergies — are at increased risk of developing prolonged COVID-19. Girls appear to be more likely to develop this condition than boys, and older children appear to be at greater risk than infants and young children. Some people may be genetically predisposed to this condition, Suggest researchYonts says it has treated children whose parents have also been infected with the long-running COVID virus. This is not evidence that susceptibility to COVID is long genetic, but it does raise the possibility of it happening.
Even without knowing the exact causes of the coronavirus in children, specific symptoms — such as chronic pain, fatigue, or digestive problems — can be treated, Yonets says. But for more patients to get this care, all doctors need to understand the condition, not just specialists. Yonts says it’s working to educate other doctors about best practices, but there’s still a long way to go.
Ayden takes 9 to 12 tablets three times daily to control pain, recurrent attacks, and other symptoms of Long COVID.
Julie Renee Jones for TIME
Sarah Lamb has been trying to find a doctor who can help her 10-year-old son Adam for more than six months. He’s lived with prolonged COVID symptoms including digestive issues, fatigue, and pervasive inflammation since early 2022. “Every doctor we’ve seen — from cardiologist to gastroenterologist to pediatrician — all say, ‘We don’t know,'” Lamb says. I learned it and his help didn’t actually come from his doctors. It comes from Facebook [support] groups.” SpeedAn energy management strategy that involves alternating activity and rest has helped him feel tired, says Lamb, and over-the-counter heartburn medication appears to have helped restore some of his energy and appetite.
Rucker also struggled to get adequate care for her daughter, even though she and her husband are both doctors. Frustrated with doctors not understanding the condition, the Rakers decided to travel from their home in California to the Jewish National COVID-19 Assessment Program for Children’s Health in Colorado — an option that Raker knows not every family has, but feels necessary for her. Since insurance does not cover the clinic’s care, the Rakers pay for it with money they saved for Darya bat mitzvah, which had to be canceled due to her health.
“I didn’t really agree with my daughter’s idea [only] Being able to sit up in bed and take on life,” Rucker says. “I wanted her to come back. I want her to be a rude teen, play sports and not get tired of showering.”
National Jewish Health is taking an extensive approach to treating children with COVID, says program director Dr. Nathan Rabinovitch. For a week or more, children meet with several specialists for evaluation and treatment planning. The clinic only sees one or two patients a week, so its approach isn’t something that can be easily replicated on a large scale — but Rabinovich says they’ve worked with personalized treatment plans. Despite these positive results, Rabinovitch remains concerned about the future of his patients.
“How much of this is transient, and how much of it is permanent?” asks Rabinovich. “How much of what happens in adolescence or as a child will continue into adulthood?”
This question haunts Jenissa, whose 9-year-old daughter has had symptoms of COVID about five months ago and who has asked that only her first name be used to preserve her family’s privacy. Because of symptoms, including malaise after exertion, dizziness, nausea, stomach ache, rapid heart rate, headache, and cognitive dysfunction, her daughter can only cope with three hours of school a day and has had to cut out extracurricular activities.
She says Jenisa’s “worst fear” is that her daughter will never get better. She tries not to think beyond the present — in part because her daughter’s condition varies so much from day to day — but says it’s hard not to worry about the coronavirus going on forever. “It’s a very real possibility, and it’s terrifying,” she says. “As a parent, you constantly have to absorb this horror that you have about what is going on. You can’t really process it because you are trying to work and not completely freak out your child.”
There are still sick long distance operators more than two years after they contracted the infection, and it is critical to find the cure for them. But Yonets says many children get better within a year — sometimes even without formal treatment. “It’s rare for them to have any improvement over time,” she says.
Aiden often uses a power chair to conserve energy.
Julie Renee Jones for TIME
Aiden Farneau can attest to that. Disabled primarily by his pain for about a year, his symptoms have improved since entering Rainbow Babies Clinic after COVID and trying a combination of physical therapy, acupuncture, massage, sleep, nerve pain medications and supplements. Although his mobility is still limited and he suffers from brain fog, fatigue and seizures, he has returned to school on a modified schedule and can be active for a few hours at a time and see friends.
“Just keep pushing, and look on the bright side,” Aydin says. “Don’t look at the negative side. There is always hope.”
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