{"id":262150,"date":"2020-07-18T07:32:46","date_gmt":"2020-07-18T11:32:46","guid":{"rendered":"https:\/\/canadianinquirer.net\/v1\/?p=262150"},"modified":"2020-07-18T21:36:32","modified_gmt":"2020-07-19T01:36:32","slug":"why-doctors-keep-monitoring-kids-who-recover-from-mysterious-covid-linked-illness","status":"publish","type":"post","link":"https:\/\/canadianinquirer.net\/v1\/2020\/07\/18\/why-doctors-keep-monitoring-kids-who-recover-from-mysterious-covid-linked-illness\/","title":{"rendered":"Why Doctors Keep Monitoring Kids Who Recover From Mysterious COVID-Linked Illness"},"content":{"rendered":"
\"\"<\/a>
A researcher writing in the same issue added reports from other countries, finding that about 1,000 children worldwide have been diagnosed with MIS-C. (File photo: Kelly Sikkema\/Unsplash)<\/figcaption><\/figure>\n

Israel Shippy doesn\u2019t remember much about having COVID-19 \u2014 or the unusual auto-immune disease it triggered \u2014 other than being groggy and uncomfortable for a bunch of days. He\u2019s a 5-year-old, and would much rather talk about cartoons, or the ideas for inventions that constantly pop into his head.<\/p>\n

\u201cHold your horses, I think I know what I\u2019m gonna make,\u201d he said, holding up a finger in the middle of a conversation. \u201cI\u2019m gonna make something that lights up and attaches to things with glue, so if you don\u2019t have a flashlight, you can just use it!\u201d<\/p>\n

In New York, at least 237 kids, including Israel, appear to have<\/a> Multisystem Inflammatory Syndrome in Children, or MIS-C<\/a>. And state officials continue to track the syndrome<\/a>, but the Centers for Disease Control and Prevention did not respond to repeated requests for information on how many children nationwide have been diagnosed so far with MIS-C.<\/p>\n

A study published June 29 in the New England Journal of Medicine reported on<\/a> 186 patients in 26 states who had been diagnosed with MIS-C. A researcher writing in the same issue added reports from other countries, finding<\/a> that about 1,000 children worldwide have been diagnosed with MIS-C.<\/p>\n

Tracking the Long-Term Health Effects of MIS-C<\/strong><\/p>\n

Israel is friendly and energetic, but he\u2019s also really good at sitting still. During a recent checkup at Children\u2019s Hospital at Montefiore, in the Bronx, he had no complaints about all the stickers and wires a health aide attached to him for an EKG. And when Dr. Marc Foca, an infectious disease specialist, came by to listen to his heart and lungs, and prod his abdomen, Israel barely seemed to notice.<\/p>\n

There were still some tests pending, but overall, Foca said, \u201cIsrael looks like a totally healthy 5-year-old.\u201d<\/p>\n

\u201cStay safe!\u201d Israel called out, as Foca left. It\u2019s his new signoff, instead of goodbye. His mother, Janelle Moholland, explained Israel came up with it himself.<\/p>\n

And she\u2019s also hoping that after a harrowing couple of weeks in early May, Israel himself will \u201cstay safe.\u201d<\/p>\n

That\u2019s why they\u2019ve been returning to Montefiore for the periodic checkups, even though Israel seems to have recovered fully from both COVID-19 and MIS-C.<\/p>\n

MIS-C is relatively rare, and it apparently responds well to treatment, but it is new enough \u2014 and mysterious enough \u2014 that doctors here want to make sure the children who recover don\u2019t experience any related health complications in the future.<\/p>\n

\u201cWe\u2019ve seen these kids get really sick, and get better and recover and go home, yet we don\u2019t know what the long-term outcomes are,\u201d said Dr. Nadine Choueiter<\/a>, a pediatric cardiologist at Montefiore. \u201cSo that\u2019s why we will be seeing them.\u201d<\/p>\n

When Israel first got sick at the end of April, his illness didn\u2019t exactly look like COVID-19. He had persistent high fevers, with his temperature reaching 104 degrees \u2014 but no problems breathing. He wasn\u2019t eating. He was barely drinking. He wasn\u2019t using the bathroom. He had abdominal pains. His eyes were red.<\/p>\n

They went to the emergency room a couple of times and visited an urgent care center, but the doctors sent them home without testing him for the coronavirus. Moholland, 29, said she felt powerless.<\/p>\n

\u201cThere was nothing I could do but make him comfortable,\u201d she said. \u201cI literally had to just trust in a higher power and just hope that He would come through for us. It taught me a lot about patience and faith.\u201d<\/p>\n

As Israel grew sicker, and they still had no answers, Moholland grew frustrated. \u201cI wish his pediatrician and [the emergency room and urgent care staff] had done what they were supposed to do and given him a test\u201d when Israel first got sick, Moholland said. \u201cWhat harm would it have done? He suffered for about 10 or 11 days that could have been avoided.\u201d<\/p>\n

In a later interview, she talked with NPR about how COVID-19 has disproportionately affected the African American community, due to a combination of underlying health conditions and lack of access to good health care. She said she felt she, too, had fallen victim to those disparities.<\/p>\n

\u201cIt affects me, personally, because I am African American, but you just never know,\u201d she said. \u201cIt\u2019s hard. We\u2019re living in uncertain times \u2014 very uncertain times.\u201d<\/p>\n

Finally, Children\u2019s Hospital at Montefiore admitted Israel \u2014 and the test she\u2019d been trying to get for days confirmed he had the virus.<\/p>\n

\u201cI was literally in tears, like begging them not to discharge me because I knew he was not fine,\u201d she recalled.<\/p>\n

Israel was in shock, and by the time he got to the hospital, doctors were on the lookout for MIS-C, so they recognized his symptoms \u2014 which were distinct from most people with COVID-19.<\/p>\n

Doctors gave Israel fluids and intravenous immune globulin, a substance obtained from donated human plasma, which is used to treat deficiencies in the immune system.<\/p>\n

Immune globulin has been effective in children like Israel because MIS-C appears to be caused by an immune overreaction to the initial coronavirus infection, according to Choueiter, the Montefiore pediatric cardiologist.<\/p>\n

\u201cThe immune system starts attacking the body itself, including the arteries of the heart,\u201d she said.<\/p>\n

In some MIS-C cases \u2014 though not Israel\u2019s \u2014 the attack occurs in the coronary arteries, inflaming and dilating them. That also happens in a different syndrome affecting children, Kawasaki disease<\/a>. About 5% of Kawasaki patients experience aneurysms \u2014 which can fatally rupture blood vessels \u2014 after the initial condition subsides.<\/p>\n

Choueiter and her colleagues want to make sure MIS-C patients don\u2019t face similar risks. So far, they\u2019re cautiously optimistic.<\/p>\n

\u201cWe have not seen any new decrease in heart function or any new coronary artery dilations,\u201d she said. \u201cWhen we check their blood, their inflammatory markers are back to normal. For the parents, the child is back to baseline, and it\u2019s as if this illness is a nightmare that\u2019s long gone.\u201d<\/p>\n

For a Pennsylvania Teen, the MIS-C Diagnosis Came Much Later<\/strong><\/p>\n

Not every child who develops MIS-C tests positive for the coronavirus, though many will test positive for antibodies to the coronavirus, indicating they had been infected previously. That was the case with Andrew Lis, a boy from Pennsylvania who was the first MIS-C patient seen at the Nemours\/Alfred I. duPont Hospital for Children in Wilmington, Delaware.<\/p>\n

Andrew had been a healthy 14-year-old before he got sick. He and his twin brother love sports and video games. He said the first symptom was a bad headache. He developed a fever the next day, then constipation and intense stomach pain.<\/p>\n

\u201cIt was terrible,\u201d Andrew said. \u201cIt was unbearable. I couldn\u2019t really move a lot.\u201d<\/p>\n

His mother, Ingrid Lis, said they were thinking appendicitis, not coronavirus, at first. In fact, she hesitated to take Andrew to the hospital, for fear of exposing him to the virus. But after Andrew stopped eating because of his headache and stomach discomfort, \u201cI knew I couldn\u2019t keep him home anymore,\u201d Lis said.<\/p>\n

Andrew was admitted to the hospital April 12, but that was before reports of the mysterious syndrome had started trickling out of Europe.<\/p>\n

Over about five days in the pediatric intensive care unit, Andrew\u2019s condition deteriorated rapidly, as doctors struggled to figure out what was wrong. Puzzled, they tried treatments for scarlet fever, strep throat and toxic shock syndrome. Andrew\u2019s body broke out in rashes, then his heart began failing and he was put on a ventilator. Andrew\u2019s father, Ed Lis, said doctors told the family to brace for the worst: \u201cWe\u2019ve got a healthy kid who a few days ago was just having these sort of strange symptoms. And now they\u2019re telling us that we could lose him.\u201d<\/p>\n

Though Andrew\u2019s symptoms were atypical for Kawasaki disease, doctors decided to give him the standard treatment for that condition \u2014 administering intravenous immune globulin, the same treatment Israel Shippy received.<\/p>\n

\u201cWithin the 24 hours of the infusion, he was a different person,\u201d Ingrid Lis said. Andrew was removed from the ventilator, and his appetite eventually returned. \u201cThat\u2019s when we knew that we had turned that corner.\u201d<\/p>\n

It wasn\u2019t until after Andrew\u2019s discharge that his doctors learned about MIS-C from colleagues in Europe. They recommended the whole family be tested for antibodies to the coronavirus. Although Andrew tested positive, the rest of the family \u2014 both parents, Andrew\u2019s twin brother and two older siblings \u2014 all tested negative. Andrew\u2019s mother is still not sure how he was exposed since the family had been observing a strict lockdown since mid-March. Both she and her husband were working remotely from home, and she says they all wore masks and were conscientious about hand-washing when they ventured out for groceries. She thinks Andrew must have been exposed at least a month before his illness began.<\/p>\n

And she\u2019s puzzled why the rest of her close-knit family wasn\u2019t infected as well. \u201cWe are a Latino family,\u201d Ingrid Lis said. \u201cWe are very used to being together, clustering in the same room.\u201d Even when Andrew was sick, she says, all six of them huddled in his bedroom to comfort him.<\/p>\n

Meanwhile, Andrew has made a quick recovery. Not long after his discharge in April, he turned 15 and resumed an exercise routine involving running, pushups and situps. A few weeks later, an echocardiogram showed Andrew\u2019s heart was \u201cperfect,\u201d Ed Lis said. Still, doctors have asked Andrew to follow up with a cardiologist every three months.<\/p>\n

An Eye on the Long-Term Effects<\/strong><\/p>\n

The medical team at Montefiore is tracking the 40 children they have already treated and discharged. With kids showing few symptoms in the immediate aftermath, Chouetier hopes the long-term trajectory after MIS-C will be similar to what happens after Kawasaki disease.<\/p>\n

\u201cUsually children who have had coronary artery dilations [from Kawasaki disease] that have resolved within the first six weeks of the illness do well long-term,\u201d said Choueiter, who runs the Kawasaki disease program at Montefiore.<\/p>\n

The Montefiore team is asking patients affected by MIS-C to return for a checkup one week after discharge, then after one month, three months, six months and a year. They will be evaluated by pediatric cardiologists, hematologists, rheumatologists and infectious disease specialists.<\/p>\n

Montefiore and other children\u2019s hospitals around the country are sharing information. Choueiter wants to establish an even longer-term monitoring program for MIS-C, comparable to registries that exist for other diseases.<\/p>\n

Moholland is glad the hospital is being vigilant.<\/p>\n

\u201cThe uncertainty of not knowing whether it could come back in his future is a little unsettling,\u201d she said. \u201cBut I am hopeful.\u201d<\/p>\n

This story is part of a partnership that includes WNYC<\/a>, NPR<\/a> and Kaiser Health News.<\/em><\/p>\n

Kaiser Health News<\/a> (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation<\/a> which is not affiliated with Kaiser Permanente.<\/em><\/p>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Israel Shippy doesn\u2019t remember much about having COVID-19 \u2014 or the unusual auto-immune disease it triggered \u2014 other than being …<\/p>\n","protected":false},"author":44,"featured_media":262151,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[37,54365],"tags":[],"class_list":["post-262150","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","category-instagram","mauthors-fred-mogul-wnyc","mauthors-maria-godoy-npr-news","mauthors-kaiser-health-news"],"_links":{"self":[{"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/posts\/262150","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/users\/44"}],"replies":[{"embeddable":true,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/comments?post=262150"}],"version-history":[{"count":1,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/posts\/262150\/revisions"}],"predecessor-version":[{"id":262152,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/posts\/262150\/revisions\/262152"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/media\/262151"}],"wp:attachment":[{"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/media?parent=262150"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/categories?post=262150"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/canadianinquirer.net\/v1\/wp-json\/wp\/v2\/tags?post=262150"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}