“When he woke up [November 10] and he felt even worse, I said, ‘You know what, let’s get tested before we come in, because I don’t want you to get the Covid vaccine if you actually have Covid,'” the mother said. from Michigan.
Jack tested positive for Covid-19 that day and has been living with the symptoms ever since.
This kept him from staying in school all day. He has to limit the time he plays baseball with the other kids in the neighborhood. Even playing Fortnite too long can make him sick the next day.
He is one of the millions of children potentially affected by Covid for a long time.
“I have a stomach ache. It’s a little hard to breathe. You have a stuffy nose. It’s just an absurd amount of stuff you can feel,” Jack Ford said. “It’s really annoying sometimes. It’s not like a cold, you know, it’s like Covid.
“People may think you feel like you’re faking it, but you don’t. You feel like you have Covid,” he added.
“An undiagnosed problem”
Many doctors treating children in long Covid clinics across the country say they have long waits for appointments. Some are booked until September.
An unusual range of symptoms
There are no specific tests for long Covid. It is unclear which children will have it, as it can happen even when a child has a mild case of Covid-19.
Even when children with long-lasting Covid are tested for conditions that could cause these symptoms, nothing may show up.
“They tested me, and it looked like everything was fine with me, but they did their best to find something,” Jack Ford said.
His pulmonary function test and electrocardiogram came back normal. “The Covid Clinic said this is very common in children who have had Covid for a long time. Sometimes all the tests come back normal,” Kim Ford said.
“We’ve also checked them and their gastrointestinal tracts are normal. I’m doing a big immune workup and their immune systems seem normal. Everything ‘seems normal,’ but the kids aren’t functioning as usual,” Edwards said. “I tell families, ‘you have to remember, there are limits to what medical science understands and can test.’ Sometimes we just aren’t smart enough to know where to look.”
Adult problems tend to be more obvious, Edwards said, because they’re more likely to have organ dysfunction that shows up on tests.
At the Sexson Tejte Clinic in Texas, children tend to fall into a few categories. Some suffer from fatigue, brain fog and severe headaches, “to the point that some kids can’t go to school, failing grades, those kinds of issues,” she said.
Another group has heart problems like heart palpitations, chest pains and dizziness, especially when resuming their usual 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 adult symptoms, “but it’s not the mixed bag of different organ system involvement in adults.”
‘Once this bucket is empty, that’s it’
One of Jack Ford’s symptoms is affecting the amount of energy he has for typical activities.
“Long-time Covid patients have post-exertional malaise, which is Jack’s biggest problem,” Kim Ford said. “So if he’s overdoing it – and he doesn’t even have to physically overdo it. He might have been really upset about something the night before, or he might be really mentally engaged 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 an entire day. Her parents gave her back one to two hours a day and gradually increased it to about 5 1/2 hours a day.
“We’ve tried to get it to six, but it hasn’t worked so far,” Kim Ford said. “He woke up pretty miserable the next day.”
Edwards, who runs the long-running Covid clinic in Cleveland, says she needs to talk to parents about carefully balancing the amount of energy their kids expend. Most healthy people can pass if they are tired, but those with long Covid cannot. “It’s like they have a 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 this bucket is empty, that’s all,” Edwards said.
Some of his teenage patients are exhausted from the typical drama at school.
“Long-haulers have to think about every aspect of their day and when they can expend that energy. They have to have that balance. Otherwise, they burn out.”
Many also have anxiety. Some of this may be from the illness itself or the doubt they have heard from doctors or adults when they say they don’t feel well.
Experts across the country say they have heard from patients whose complaints are ignored, even after a drastic change in their condition. They were told they were exaggerating or trying to get attention, or that the symptoms were all in their head.
Yonts thinks there needs to be better recognition among doctors that long Covid can be a real problem.
“I have two children in wheelchairs after having Covid who have never been in a wheelchair before. There is a child on crutches. I have a child who has lost the use of his hands,” said Edward. “These children must be believed.”
Help is available, but not everyone has access
There is no specific treatment for long Covid, but most of these clinics are multidisciplinary.
At Edwards’ clinic, which opened last year, experts can treat lung issues, digestive issues, physical rehabilitation, sleep issues, mental health issues and more. There is a nutritionist on staff, as well as an acupuncturist and a pediatrician who is licensed in Chinese herbal medicine.
In addition to working on a child’s schedule so they can figure out where to spend their energy and when to take breaks, Edwards’ clinic teaches kids to meditate. They do massage therapy and mind-body exercises.
“Children need several elements of help. They improve dramatically, really, if we’re aggressive and they get intensive support and therapy,” Edwards said.
But not all children can enter a clinic.
“I’ve spoken to so many people working with pediatric Covid recovery, and they’re all saying the same thing: ‘We’re worried about kids who don’t get help, who don’t have parents who can help them. defend or navigate the medical system. It keeps me awake at night,” Edwards said.
Much of what her clinic does is encourage children to get enough sleep and eat healthy foods, but not every family can afford healthy foods.
“It terrifies me for these families in particular, because they’re already starting behind. And now they have kids with long-haul Covid,” Edwards said. “You just have to hope that more people will become aware of the problem and try to help.”