Post COVID: ‘It is heartbreaking to watch your child suffer’

An increasing number of children have been hospitalized due to coronavirus and, more often, the complications that can follow. Israeli health experts had seemed sure that children were not at risk from coronavirus during the first and second waves of the pandemic, but have since revised that assessment.

On Monday, Meir Medical Center in Kfar Saba reported that two children, ages eight and 14, were hospitalized with post-coronavirus symptoms. They had fallen ill a month ago, the hospital reported, and now suffer from “a complex disease that includes multi-system failure.”

“It is important to be aware of this and pay attention to the symptoms after coronavirus,” said Dr. Deganit Adam, director of the pediatric intensive care at Meir.

The first time Pediatric Inflammatory Multisystem Syndrome (PIMS) appeared in scientific literature was in early May when about 15 cases were reported in New York, said Dr. Efraim Bilavsky, head of the coronavirus program at Schneider Children’s Hospital, in a previous interview.

Since then, cases have been reported around the world.

These children suffer from fever and inflammation. Some have rashes, abdominal pain, vomiting or diarrhea. Respiratory involvement has been reported in less than half the cases, but does occur.

In Israel, there have only been a handful of cases of PIMS and “most of these kids will be OK,” said Dr. Yosi Ben-Ari, director of the pediatric intensive care unit at Rambam Health Care Campus.

He told The Jerusalem Post that while some of these children need intensive care treatment – they could even be hooked up to an ECMO machine that helps pump and oxygenate their blood outside the body, allowing the heart and lungs to rest – they usually recover.

“We recently had a child who was 10-years-old and he was on ECMO for three or four days and now he is doing very well,” Ben-Ari shared as an example.

Rather, what worries doctors more today is another phenomenon that seems to be increasingly striking the country’s children: “post-COVID” or “long-COVID” – less severe symptoms, but after effects of the virus that are turning children’s lives upside down.

According to Liat Ashkenazi-Hoffnung of the Pediatric Infectious Diseases Unit in Schneider Children’s Medical Center of Israel, while there are few PIMS patients, post-COVID affects many more children and teens who had mild or even asymptomatic cases of coronavirus.

There is a long list of long-COVID symptoms and they can range from minor to severe, Ashkenazi-Hoffnung explained.

The Centers for Disease Control recently compiled a list that includes the following: fatigue, shortness of breath, coughing, joint pain and chest pain, difficulty concentrating (brain fog), depression, headaches, intermittent fever and heart palpitations.

More serious long-term effects, which are currently being explored, include inflammation of the heart muscle, lung abnormalities, kidney injury, rashes and hair loss, neurological issues such as smell and taste problems, insomnia and psychiatric issues, including depression, anxiety and changes in mood.

“They are not life threatening [symptoms],” Ashkenazi-Hoffnung said, “but they are life-altering.”

She told about one of her teen patients that lost 25% of her body weight – 30 kilos – after she was COVID-free. The child became vitamin and nutrient deficient and she was always exhausted.

“We have kids that were involved in competitive sports such as judo, basketball and soccer – kids that participated in sports for hours a day and now cannot exercise for more than a few minutes,” Ashkenazi said. “I had a 15-year-old girl who was involved in competitive judo. Its five months since she had coronavirus and she cannot even lift her arms to make a ponytail.”

Other kids, she said, developed asthma or asthma-like symptoms – kids with no history of such an ailment.

In the post-coronavirus clinic at Schneider, Ashkenazi-Hoffnung said that they run several tests and try to identify the cause of the symptoms so that they can treat them. But in some cases there is no explanation except that these children and teens are still recovering from coronavirus long after the virus left their systems.

She made clear that while the symptoms may show up right away, they last a long time – not three to four weeks, but three to four months, long enough to impact these children’s daily lives.

“There is not enough research yet, we are just starting to learn about this,” she told the Post.

What she does know is that, “this is not psychological … this is a real sickness.”

She said that she often has to explain to parents that their children are not making up their sickness and that they are not alone. When children fall asleep during their Zooms to the wrath of their teachers, who accuse them of being lazy or not trying, “I write them notes and explain to them that their exhaustion is real and these students are not purposely doing this.”

Ashkenazi-Hoffnung said she is not sure how many kids suffer from post-COVID, but she estimates anywhere between 10% and 30% of those who recovered in Israel.

According to the latest report by the Health Ministry, 231,522 young adults under the age of 20 have had coronavirus. Data presented Sunday morning by the Health Ministry showed that only eight people under the age of 20 have died thus far.

Ashkenazi-Hoffnung’s clinic already sees around 50 patients and she said that as schools continue to open up, she expects that number to increase.

On Monday, the coronavirus cabinet approved a plan to allow students in grades five and six and 11 and 12 in green and yellow cities – as well as orange cities with a vaccination rate of 70% or higher – to return to their classrooms.

Chava (name shortened to protect identity) from a yishuv outside Jerusalem told the Post that her son developed long-COVID after he and the rest of the family contracted coronavirus. While his siblings and parents fully recovered, 17-year-old M. never did.

“He developed severe inflammation in his brain that has caused anxiety and extreme obsessive-compulsive disorder that has rendered him non-functional,” Chava said.

She said her son was enrolled in an elite Jerusalem yeshiva and was completing a college degree alongside his high-school studies just a year ago. Now, “he cannot concentrate on a game of chess.”

In addition, he suffers from extreme fatigue, so much that he cannot even complete a session of physical therapy – “he hardly moves.”

Chava has traveled from specialist to specialist. She said she had a meeting with a neurologist at Schneider on Tuesday, as she is searching for someone to help her child.

Marnie Spizer from Alon Shvut has a story that is not too dissimilar.

Her 14-year-old daughter, Celia, was sick with a moderate case of COVID-19 earlier this year. Now, she suffers from horrible insomnia and emotional issues that have rendered her “totally withdrawn. She has a lot of anxiety. It is hard for her to leave the house or talk to anyone.”

She said, “I think people need to be very careful. This disease is very serious and people are not necessarily taking it seriously. They don’t even realize the long-term impact of it.”

Chava said that she has become frustrated by posts on social networks where people “kvetch” that they cannot go to the mall or enjoy a meal at a restaurant.

“I also want stores to open,” she told the Post. “But there is a reason that our teens cannot hang out at Pizza Hut. No one knows who will be the next teen who will get severe COVID or post-COVID.”

She admitted it has been comforting to learn that post-COVID impacts teens all over the world and that there are even other teens in Israel with post-COVID depression and anxiety.

 “It is comforting to know that we are not the only ones, but this is our kid,” she said. “He had so much potential and we just want him back.”

She continued, “He is really suffering. It is heart-breaking to watch your child suffer.”