What's next for MIS-C? 'So many unknowns'

Posted at 9:28 PM, Jul 22, 2021
and last updated 2021-07-22 21:48:53-04

INDIANAPOLIS — Two teenage central Indiana boys share something few experienced. Richard Barnes and Jax Johnson both were hospitalized with Multisystem Inflammatory Syndrome in Children, better known as MIS-C, this past winter and are both now recovering.

“Something that I never knew existed, now is a word we use so often,” Sue Johnson said. Her son, Jax, stayed for days in the PICU where he was in acute heart and respiratory failure.

“I thank my lucky stars, like, I thank God every day to be honest with you, you know, try to hug them and tell them I love them as much as possible,” Sue said of her 13-year-old son.

“It just like, felt like not real. [It felt like] a dream, like a nightmare or something,” Jax added.

Now, the teen is slowly returning to activities like Tae Kwon Do. After virtual school last semester, he is heading back to the classroom come fall.

Recently, Jax tested positive for a possible autoimmune disorder and is losing his hair. In the months since his hospitalization, he received an iron infusion. His mother said doctors told them both complications may be because of MIS-C.

“Nobody can really give us a definite answer. Or they haven't been able to give me one. Can he get this again? Can he get COVID? Again, now with his new variant? How does that affect us? Is that something we need to be worried about?” Sue questioned.

Rushville teen Richard Barnes said his stamina is certainly not where it was before his MIS-C diagnosis. The high school student is active in athletics, specifically baseball and football.

“I figured out that mainly MIS-C is going to be a part of my life forever, and I can’t take it away,” Richard said.

After he came home, Richard finished out his freshman year in school, taking drivers ed, picking up a part-time job and returning to the baseball diamond in April.

“If you’d would’ve told me back in January, that he was going to do all of this six months out, I would’ve been shocked, just because of how bad he got,” Beth Barnes, Richard’s mom, said. She said her son has “bounced back” and is making her “busier now than before this all happened.”

Richard is still waiting to return to contact football. Doctors, he said, are waiting for his enlarged spleen and liver from MIS-C to normalize.

“Just gotta be thankful that I’m still able to be here, still able to play,” Richard said.

Even a year since first being identified, MIS-C is still leaving many with questions. A team at Riley Hospital for Children are trying to give both teens and their families answers to the mystery condition.

Since starting the MIS-C Clinic in February, about 20 kids came through. Some doctors are following these patients for up to two years after a child’s initial diagnosis. Dr. Samina Bhumbra with Riley’s MIS-C Clinic said the clinic “is a one stop shop” where doctors from different areas come together in one place.

“We’re participating in some of the national studies that are ongoing regarding MIS-C, so this is a great opportunity for some of those coordinators to pop into the clinic and follow-up,” Dr. Bhumbra said.

There's a little over 100 confirmed MIS-C cases in Indiana, Dr. Bhumbra said. Riley has seen 70 or so of those cases. Nationwide as of the end of June, the CDC reported nearly 4,200 cases.

“The toughest part is, it’s hard to know without a crystal ball, but as long as there is COVID, we’re probably going to see MIS-C going forward,” Dr. Bhumbra said.

Compared to a year ago, Dr. Bhumbra said more is known about MIS-C treatments, shortening hospital stays. She said doctors across the nation and world are still working to narrow the range in presentation and identify long-term outcomes.

MIS-C is generally diagnosed several weeks after a COVID diagnosis, but can still develop with mild or no symptoms.

Sue Johnson explained how in February her family was unaware Jax ever had COVID. In Richard’s case, the Barnes family shared that back in March how the teenager had mild COVID symptoms over the holidays.

Dr. Bhumbra said it is important to know the signs and symptoms of MIS-C in the case it is not clear if a child had COVID-19.

Symptoms per the CDC include:
A fever AND any of the following signs and symptoms:

    • Abdominal (gut) pain
    • Bloodshot eyes
    • Chest tightness/pain
    • Diarrhea
    • Feeling extra tired
    • Headache
    • Low blood pressure
    • Neck pain
    • Rash
    • Vomiting

Be aware that not all children will have all the same symptoms.
Dr. Bhumbra said doctors at Riley are expecting another wave of MIS-C cases due to a rise in COVID cases. She said MIS-C cases start to show up in the ER two to five weeks after a peak COVID-19 period.