Researchers studying link between mystery illness in children and impact on young brains

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GEORGETOWN, Texas (KXAN) — Michelle Jones spent every moment right by her daughter’s side. 

In mid-April, Adeline Shed, 16, went from fishing at Blue Hole with her mom to suddenly feeling abdominal pain. 

The next few weeks Jones said Adeline only got worse and started developing more symptoms. 

“She was incredibly fatigued,” said Jones. “She had a very sore throat, and she said her stomach was just nauseated… she had pain right underneath her left rib cage.”

Jones, who is a medical assistant, would shuttle Adeline to her pediatrician trying to figure out what happened.

“I took her to her pediatrician — they tested her for COVID three times, and they all came back negative, every single one of them,” explained Jones. “She was running fevers of 106, 104, 105, it was not a good situation.”

Jones said she also took her to Seton Medical Center Williamson, but after two weeks of no relief, she rushed her daughter to Dell Children’s Medical Center. She was sure it was mono, but turns out it was coronavirus. 

She explained a blood test ordered by one of the infectious disease specialists finally showed she had the virus. A scan and x-ray also revealed Adeline had an enlarged spleen and blood clots in her lungs. 

Jones remembers they were immediately rushed to an isolated floor of the hospital, and it was there where she started praying. 

Adeline Shed spent more than two weeks at Dell Children’s Medical Center because of COVID-19. (Courtesy: Michelle Jones) 

“I was told that she may not make it — just to brace myself, and it was a horrible feeling,” said Jones. “You feel so hopeless, just looking at your child in bed hooked up to machines and wires — tubes coming out of everywhere.”

MIS-C cases reported across Texas

Adeline had no underlying health conditions. Her mom said it was at Dell Children’s where she was diagnosed with a rare illness in children that hits after a COVID-19 infection.

Jones recalls doctors telling her about Multisystem Inflammatory Syndrome in Children or MIS-C. 

According to the Centers for Disease Control and Prevention, the illness is a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes or gastrointestinal organs. 

The CDC lists symptoms including fever, abdominal pain, vomiting, diarrhea, neck pain, rash, bloodshot eyes or feeling extra tired. 

Dell Children’s has treated three confirmed MIS-C cases since June.

“If you go as far as the CDC guidelines, they need to have the fever. They need to have at least two different organ systems involved, some abnormal labs, either they have to have a positive COVID test result or exposure to someone with COVID positive — that’s when you define someone as having MIS-C,” explained Dr. Meena Iyer, Chief Medical Officer at Dell Children’s Medical Center. 

Dr. Iyer did not treat Adeline, and for privacy reasons the hospital could not say if the teen is one of the confirmed MIS-C cases. Dr. Iyer tells KXAN investigator Arezow Doost that doctors at the hospital are studying the virus and the inflammatory illness. 

Neurological concerns

Jones said she worries about long-term impacts after her daughter battled MIS-C — including seizures and brain damage. 

A recent study published by JAMA, a medical journal, looked at neurological impacts to young developing brains after a MIS-C diagnoses. 

“Of the 27 children with COVID-19 pediatric multisystem inflammatory syndrome, four patients (14.8%) who were previously healthy had new-onset neurological symptoms,” explained the study out of London.

Researchers further explained symptoms included brain damage, headaches and reduced reflexes. The study also said all four patients required intensive care unit admission. 

“It’s still so early. There’s a lot of research and study going on about this right now. As you know we do see a symptom of loss of smell — a loss of taste as a sign of COVID. So, there’s a lot of studies going on,” said Dr. Iyer. 

Dr. Iyer explained the CDC is working on a new report about the neurological impact of MIS-C, expected to be released soon.

“We do see sometimes kids coming with increased seizure frequency, or infections in the brain or stroke, and then they have COVID positives. So, they can present as neurological complications, but there is still much research that needs to be done,” she said.

How a MIS-C case is confirmed

The Texas Department of State Health Services, has received reports of eight confirmed cases of MIS-C, and fewer than 10 reports of suspected cases.

A spokesperson with the agency said cases reflect patterns seen nationally.

DSHS uses these steps to confirm a case:

  • Clinicians report the suspected case to the local health department.
  • The local health department makes sure the case meets the national case definition, and then reports the case to DSHS, along with the MIS-C case report form and the COVID-19 case report form.
  • DSHS reviews the reporting forms and any submitted medical records to confirm the MIS-C case meets case definition.
  • If confirmed, DSHS reports the case to CDC.
  • CDC reports aggregate data.

Home at last

Adeline Shed has been home recovering since early June. Her mom said she still gets tired easily, but her headaches are now gone after battling COVID-19 and MIS-C. (Courtesy: Michelle Jones)

Adeline spent more than two weeks at the hospital. 

Her mom explained after she was given a lupus and rheumatoid arthritis drug, she started feeling better within days. She was discharged in early June. 

“I can’t explain the feeling, it’s so good to wake up and know that she’s home, and she’s ok, and that I did the right thing by taking her in,” said Jones, who also tested positive for antibodies. 

Jones said Adeline no longer has a lot of headaches, but she still gets tired easily. She said her daughter is back to herself again and is getting ready for high school. 

Her advice to parents is too trust your gut and push for a blood test if there are no signs that your child is getting better. 

Copyright 2020 Nexstar Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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