“When he woke up [November 10] and he felt even worse, I said, ‘You know what, let’s test you before you go in because I don’t want you to get the Covid vaccine if you actually have Covid,'” said the Michigan mother.
Jack tested positive for Covid-19 that day and has been living with the symptoms ever since.
It prevented him from staying at school all day. He has to limit how much he plays baseball with the other neighborhood kids. Even if he plays Fortnite for too long, he can feel nauseous the next day.
He is one of potentially millions of children with long-term Covid.
“My stomach hurts. It’s a little hard to breathe. You have a stuffy nose. It’s just an absurd amount of things you can feel,” said Jack Ford. “It’s really annoying sometimes. It’s not like a cold, you know, it feels like Covid.
“People may think you’re pretending, but you’re pretending. You feel like you have Covid,” he added.
‘An undiagnosed problem’
Many doctors who treat children in long Covid clinics across the country say they have to wait a long time for appointments. Some are booked through September.
An unusual set of symptoms
There are no specific tests for long Covid. It is not clear which children will get it, as it can happen even if a child has a mild form of Covid-19.
Even when children with long-term Covid are tested for conditions that can cause these symptoms, it is possible that there is nothing to worry about.
“They tested me and it seemed like nothing was wrong with me, but they tried their best to find something,” said Jack Ford.
His pulmonary function test and EKG came back normal. “The Covid clinic said this is very common in children with long-term Covid. Sometimes all the tests come back to normal,” Kim Ford said.
“We’ve also examined them and their GI tract is normal. I do a major immune test and their immune system seems normal. Everything ‘looks normal,’ but the kids are not functioning as normal,” Edwards said. “I say to the families, ‘You have to remember that there are limits to what medical science understands and can test.’ Sometimes we’re just not smart enough to know where to look.”
Adults’ problems tend to be more obvious, Edwards said, because they’re more likely to… have organ dysfunction that shows up on tests.
At Sexson Tejte’s Texas clinic, kids often fall into a few categories. Some have fatigue, brain fog and severe headaches, “to the point where some kids can’t go to school, grades fail, those kinds of problems,” she said.
Another group has heart problems such as palpitations, chest pain and dizziness, especially when they return to their normal activities.
Another group has stomach problems. Many of these children also have a change in their sense of taste and smell.
Sexson Tejte said it’s not totally different from the symptoms adults have, “but it’s not the jumble of different organ systems in adults.”
“Once that bucket is empty, that’s it”
One of Jack Ford’s symptoms affects the amount of energy he has for typical activities.
“Tall Covid patients have post-exertional malaise, which is Jack’s biggest problem,” Kim Ford said. “So if he’s overdoing it — and it doesn’t even have to be physically exaggerating. It could be that he was really upset about something the day before, or he’s mentally preoccupied with something like watching TV or playing video games sitting in his chair — – will knock him out.”
Energy has become such a problem that Jack can’t go to school for a whole day. His parents started him back with one to two hours a day and gradually increased that to about 5½ hours a day.
“We’ve tried to kick him to six, but so far we haven’t succeeded,” said Kim Ford. “He woke up pretty miserable the next day.”
Edwards, who runs the long-term Covid clinic in Cleveland, says she needs to talk to parents about carefully considering how much energy their children are expending. Most healthy people can persevere when they are tired, but people with long-term Covid cannot. “It’s like they have one bucket of energy, and it has to be used carefully for school, for playing, for watching TV. Everything they do takes energy, and once that bucket is empty, that’s it,” Edwards said. .
Some of her teenage patients are exhausted by the typical drama at school.
“Land haulers need to think about every aspect of their day and when they can use that energy. They need to have that balance or they’ll run out.”
Many also have fear. Some of that may stem from the condition itself or from the doubt they’ve heard from doctors or adults when they say they’re not feeling well.
Experts across the country say they’ve heard of patients whose complaints are being ignored, even after a major change in their health. They have been told that they are acting dramatic or seeking attention, or that the symptoms are all in their head.
Yonts believes that doctors should better recognize that Covid can be a real problem for a long time.
“I have two children in wheelchairs after Covid who have never been in a wheelchair. There is one child on crutches. I have a child who lost use of her hands,” said Edward. “These kids are to be believed.”
Help is available, but not everyone has access
There is no specific treatment for long-term Covid, but most of these clinics are multidisciplinary.
At the Edwards Clinic, which opened last year, experts can address lung problems, digestive problems, physical rehabilitation, sleep problems, mental health issues and others. There is a nutritionist on staff, as well as an acupuncturist and pediatrician licensed in Chinese herbal medicine.
In addition to working out a child’s schedule so they can determine what to spend their energy on and when to take breaks, Edwards’ clinic teaches children to meditate. They do massage therapy and exercise.
“Kids need multiple elements of help. They get significantly better, really, if we’re aggressive and they get intense enveloping support and therapy,” Edwards said.
But not all children can go to a clinic.
“I’ve talked to so many people working with Covid recovery in children, and they all say the same thing: ‘We’re concerned about the kids who don’t get help, who don’t have the parents who can advocate for them. medical system.’ It keeps me up at night,” Edwards said.
Much of what her clinic does is encourage children to get enough sleep and eat healthy, but not all families can afford healthy food.
“It especially scares me about those families, because they’re already lagging behind. And now they have children with long-term Covid,” Edwards said. “You just have to hope that more people become aware of the problem and try to help.”