ROUND ROCK, Texas (KXAN) — The Dalesandros remember the night in January their son couldn’t shake a fever. 

They didn’t think much of it until the next morning when he woke up with stiffness in his neck. 

“He couldn’t move it, it was really sore, really hurt him a lot,” said David Dalesandro. “You could see that his neck, there was a little bit of a bulge on the side of his neck.”

The parents took Nikko, 13, to a local clinic where he was put on antibiotics. They said he started to feel better, but when the medication wore off all the symptoms retuned. 

Nikko Dalesandro was hospitalized for almost four days in January after being diagnosed with MIS-C. (Courtesy: Claudia Dalesandro) 

“I knew something was wrong with him especially when he got 104.4 fever,” said Claudia Dalesandro. “I noticed that he was not really responsive. I was talking to him, he was not really responding anything back to me, and I also noticed that he was very lethargic.”

Claudia said she told her husband they needed to go to the hospital right away and ended up rushing Nikko to Dell Children’s Medical Center

After multiple tests by specialists they said Nikko was diagnosed with Multisystem Inflammatory Syndrome in Children or MIS-C, which strikes after a COVID-19 infection.

Long-term outcomes

The Dalesandros said they got the virus right before Christmas. They explained Nikko didn’t have severe symptoms at the time, and it was just in the last few weeks when he started to get worse. 

MIS-C symptoms include high fever, fatigue, abdominal complaints, rash, red eyes, swollen hands and feet. 

The illness can cause inflammation to different body parts including, the heart, lungs, kidneys, brain, skin, eyes or gastrointestinal organs.

“We are seeing this inflammatory response, which concerns us because of the effect on the heart and the job of the heart basically. And how long will that last and are there groups of children that are at greater risk, and are there co-factors in those children? Are there disease processes that affect that,” explained Dr. Sarmistha Hauger, chief of Pediatric Infectious Disease at Dell Children’s. 

Doctors at Dell Children’s hope to get answers now that they’re part of of an international study that will look at the long-term impact of the illness. 

The study if funded by the National Institutes of Health. It has been named the MUSIC study, short for the Long-TerM OUtcomes after the Multisystem Inflammatory Syndrome IChildren. 

“We really want to learn more about this disease and since it’s really rare, coming together with multiple other pediatric centers all around the United States will allow for more patient collection and more data for us to really learn from everyone,” explained Dr. Keren Hasbani, pediatric cardiologist at Dell Children’s and Pediatric & Congenital Cardiology Associates, an affiliate of Pediatrix Medical Group. 

Disproportionately impact of illness

Hasbani leads the team of experts involved in the study and said data on patients treated at Dell Children’s will be included.

The study will analyze data from 600 children all over the country and Canada already diagnosed and recovering from MIS-C, as well as those who become infected within the coming 24 months. 

“This study is hoping to continue to watch these patients up to five years, and watch to see what happens to them over that time,” explained Hasbani. “Obviously the first year of their illness is the critical part where we are going to watch the most closely.”

Hauger and Hasbani said they’ve treated 36 children with MIS-C at Dell Children’s, with 50% needing ICU care. 

“Many of them are pretty ill,” said Hauger. “We are deep diving into these cases to see, you know, how they are presenting. Are there particular attributes to them that make us think that they will have a worse presentation than another?”

Hauger also explained more boys are diagnosed with the illness that are about 12-years-old, and also the majority of cases are in either Black or Hispanic children. 

“We’re seeing more patients with MIS-C that are African American and Hispanic, but we also know that they are being exposed more to COVID than the rest of the population,” said Hasbani “And so, it’s not yet clear if they have straight risk factors putting them at higher risk or this is just simply exposure.”

Hauger added being part of the study with 29 other leading children’s medical centers will help doctors understand why it disproportionately impacts Black and Hispanic children. 

“That’s why you need a lot of places to put the data in and to see, as you know, is this the same thing that you’re seeing up in Minnesota versus New York versus Texas versus Hawaii? There’s different ethnicities, different demographics and to that point are there different groups of children that may be at higher risk,” she said. 

MIS-C across Texas

Dell Children’s numbers mirror what the state is reporting with 62% cases in boys and a majority including Hispanic and Black children. 

So far, there are 54 confirmed cases across the Texas and one death due to MIS-C, according to Texas Department of State Health Services. It takes the state several weeks to update confirmed cases after getting information from hospitals.

Hauger said as the COVID-19 vaccine becomes available for children the hope is that the risk of MIS-C decreases significantly. Right now there are several vaccine trials underway in children 12 and older. 

She explained it’s still really important for everyone to continue good hand washing, social distancing and masking. 

How the study can help parents 

As doctors learn more in this study they explained it will also provide parents with information to help them identify and react to children with MIS-C symptoms. 

Parents must consent to being part of the study. Patient age and demographic information will be used, but no names. 

The Dalesandro family said their son will need regular monitoring of his heart to make sure there are no changes. (Courtesy: David Dalesandro) 

The Dalesandros have given permission to be part of the study. They said they only learned more about the syndrome after Nikko’s diagnosis and hope sharing his story will help other parents. 

After almost four days at the hospital they are grateful for the experts who immediately diagnosed Nikko. 

“One of the doctors actually told me that he was… thankful that we brought Nikko on time because the effects of…  this syndrome with him — a few more days — it would have been devastating for his heart,” explained Claudia. 

Nikko’s heart will be checked every month to make sure there’s no complications. His parents said he’s starting to act like himself again. 

“Just use your instinct if you know something is wrong with you kid… just rush them to the ER don’t feel guilty for overreacting, because we’re talking about the life of your kid,” said Claudia.