Almost since the pandemic began, it has been the expert mantra when it comes to Covid-19 and the threat to children: They are more likely to be hit by a bus than they are to be seriously affected by the virus.
When Lois Benson's two young sons developed a cough and a slight temperature in April, she was initially not concerned. "I just gave them Calpol," says the 46-year-old ambulance manager from Aldridge in the West Midlands. But Toby [seven] and Josh [six] went downhill quickly.
"At first, 111 [the NHS emergency number] told me to stay home, but they seemed to get worse and worse," she recalls. Finally she called 999 when the boys were almost unresponsive in bed and the temperature rose to 40 ° C. They were taken to the hospital in an ambulance, where they were given oxygen and kept overnight.
Lois admits that sitting by her hospital beds, she feared the worst – and when they got through the relief was beyond words. But shockingly, this was not the end of their ordeal.
Now, seven months later, Toby and Josh are still suffering, sleeping all the time, and unable to go to school. The boys have developed serious stutters, complained of headaches, and kept repeating words.
Toby and Josh Benson are still suffering, sleeping constantly, and unable to go to school seven months after battling coronavirus in hospital
"Just when I thought they were getting better, they went downhill again," says Lois. "I've been taking care of them for seven months now and I'm afraid they'll never be fine again."
It seems that Toby and Josh, who were above all "normal, active, fun-loving kids" are among the recent victims of what many refer to as long covid – a collection of debilitating symptoms that linger for weeks or even months after death The initial infection has subsided. Although thousands of adults report such problems, doctors seem confused and unable to physically find anything wrong with them.
And the concerned parents of teenagers with the disease tell a similar story: many have been told that their children simply suffer from anxiety or increasing pain.
"It was so overwhelming," said a parent of a teenager who has had symptoms since his first illness in March. “We have a chronically ill child and absolutely no support. Nobody can tell us what's wrong with her. & # 39;
The email from Sunday was one of the first to report on the long Covid phenomenon back in May. However, it has now received scientific attention. The results of a UK study published last week show that one in 20 Covid patients has had symptoms for more than three months after being infected. Problems vary, but adults have commonly reported fatigue, difficulty breathing, palpitations, and brain fog.
The study, conducted by Professor Tim Spector, a genetics expert at King & # 39; s College London, gathered information from 4.2 million users of the Covid Symptom Study app – but does not include data on those under 18. The NHS has announced plans to offer specialized services to patients with long covid, but none of these clinics will currently be open to children.
"This is a massive blind spot," says Dr. Nigel Speight, a pediatric specialist in chronic fatigue syndrome. "If adults can have Covid for a long time, so can children."
Now, for the first time, a small survey has given a clearer picture of Long Covid's impact on families across the country.
Frances Simpson, whose two children have not felt well since the virus in March, asked parents on social media groups whether their children had experienced similar symptoms. A total of 162 parents responded, 86 percent of whom said their children had persistent symptoms for more than three months after the first signs of infection appeared. Frances, a lecturer in psychology at Coventry University, hopes her findings will stimulate further research.
She said, "This problem can be difficult for children."
Frances caught Covid-19 in March and her two children a while later. Her ten-year-old son Magnus had a fever, insomnia, headache, back pain and a metallic taste in the mouth. A few days later, her nine-year-old daughter Saskia fell ill with the virus. She could not eat for weeks and had to be helped out of bed by her mother.
"The whole thing was traumatic," says Frances. "I was worried they wouldn't be better."
After a month, her symptoms subsided, but soon returned, following a pattern described by many long Covid patients. Saskia developed breathing problems and rashes broke out all over her body.
Frances took her daughter to a pediatrician who diagnosed eczema. Another doctor gave Saskia a blood test but said there was nothing to worry about.
The results of a UK study by Professor Tim Spector published last week show that one in 20 Covid patients had symptoms more than three months after being infected
Frances says her daughter is now having "seizures" that make it difficult for her to breathe normally. She also complains of stomach ache and constant fatigue, which has resulted in problems at school. "It's horrible to see that your child can't do anything," says Frances.
It is generally accepted that children catch Covid-19 far less often than adults. Studies show they are half as likely to be infected and have even fewer serious symptoms – only 1 percent of those under 19 are hospitalized.
However, experts point out that any child who catches Covid-19 runs the risk of long-term Covid – and it is common knowledge that many viruses run the risk of long-term illness. While it can take some time, the majority of those affected by such problems recover.
Dr. Speight said, "Long Covid has some unique symptoms, but the overall pattern is the same as any post-viral disease and children suffer from it all the time."
Most people will experience some level of post-viral fatigue at some point in their life.
"In the mildest case, it's the tired, slow feeling you get after a cold or flu," says Dr. Charles Shepherd, medical advisor to the ME Association, a chronic fatigue charity. "For most people it takes a few weeks, but for some it takes months, sometimes years."
Scientists are still not sure what causes postviral fatigue, but many suspect that the immune system continues to try to fight the virus after it leaves the body. However, post-viral fatigue can also result from mild illness, which means that even children who do not suffer severely from Covid-19 can be prone to a long-term illness.
This is undoubtedly true of Kitty McFarland, a 15-year-old ballet dancer who has been in bed since catching Covid-19 in April – although she initially had mild symptoms. Her mother, Sammie, 44, says, “She used to be incredibly active and never had any health problems. Now she is down with tiredness. & # 39;
Kitty initially had a mild temperature and a sore throat. Sammie's greatest concern at the time was her older daughter, 22, who had severe asthma.
To protect her sister, Kitty insulated her bedroom for seven days as a precaution. Sammie says she didn't have problems until after that time.
Kitty complained of dizziness and heartache. Her symptoms soon worsened and she collapsed several times. At some point her father had to carry her out of the garden because she couldn't get up on her own.
Eventually she stopped getting up from her bed and her family started bringing their meals to her.
Kitty McFarland, a 15-year-old ballet dancer who has been in bed since catching Covid-19 in April – despite having mild symptoms at first
When school started again, Kitty was eager to return. But in the middle of her first day, the school called Sammie and told her to come and pick her up. "When Kitty got home, she slept for four days," adds Sammie.
In May, her general practitioner made a home visit but found no serious errors and a blood test showed nothing.
"The only thing he noticed was that Kitty's heart rate was racing every time she got up," says Sammie. "He said it was abnormally high but couldn't tell what was causing it."
The general practitioner referred Kitty to a pediatrician in London, and although the next available appointment was five months away, Sammie took the chance. Just last week, the specialist's office contacted Sammie to cancel the appointment because they doubted there was anything they could do to help.
Insisting that they be there, Sammie traveled to London with Kitty from her home in Dorset. After a 90-minute consultation and an initial diagnosis of increasing pain, the doctor admitted it might be Covid but said he had no idea how to treat it.
Mothers Lois, Frances, and Sammie all fear that if they push the doctors too hard, they will be branded with a mental disorder. Fabricated or induced disease – formerly known as Munchausen Syndrome – is a recognized medical condition in which a parent or caregiver exaggerates, invents, or causes an injury or illness in a child. It is viewed as a form of child abuse, and while no one knows what makes someone behave like this, one theory is that it is a way of getting attention.
Dr. Speight says it's not uncommon for mothers of children with post-viral disease in particular to be blamed.
"It's a story we've heard hundreds of times," he says. "Unfortunately, some doctors have little interest or expertise in chronic fatigue and are quick to dismiss concerns."
Almost half of all children with chronic fatigue recover completely. "But in the meantime, these parents need support, not suspicion," adds Dr. Speight added.
Experts also say it's important that parents don't immediately assume Covid is the cause of problems, as it could lead to overlooking other more treatable conditions like anxiety disorders.
The chronic fatigue expert, Dr. David Strain, who works at the University of Exeter's medical school, has not yet seen children with long covid as his clinic is for those over 16. However, he fears that with the renewed increase in Covid infections, the number of patients with long-term problems will also increase.
He fears that the NHS may be blind: "There are few specialists in chronic fatigue in children in the NHS and this is definitely an area where we need more research."
Dr. Shepherd agrees, "These kids deserve to be heard."