You and MIS-C

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What is MIS-C?

Multi-system inflammatory syndrome in children (MIS-C) is an illness that happens weeks after being exposed to SARS-CoV-2, the virus that causes COVID-19. MIS-C is seen mostly in teenagers but can affect children of all ages.  

MIS-C is similar to other conditions and sometimes takes time to diagnose while more common conditions are being ruled out. National and international research is ongoing to better understand why MIS-C happens to some children but not others.

What are the symptoms?

The first symptom of MIS-C is an unexplained and prolonged high fever. Fever can last for several days. Other signs and symptoms may include:

• rash
• tiredness/weakness
• red eyes
• generalized muscle pain
• red, cracked lips
• abdominal pains or cramps
• diarrhea or vomiting
• swelling of hands or feet
• peeling of skin on the hands or feet
• headache
• unexplained irritability

Can my child pass on MIS-C to others?

No, MIS-C cannot be passed from one person to another. 

How is MIS-C diagnosed?

MIS-C can be hard to diagnose because no specific blood test exists. Instead, MIS-C is diagnosed when your child has enough typical symptoms, as well as blood tests that show excess inflammation and issues with any of their organ systems.  

Your CHEO MIS-C team

At CHEO, we will work as a team to support you and your child if they are being examined or treated for MIS-C. Your team is made up of specialist doctors, nurses and therapists to make sure that we spot any problems early and treat any remaining complications from your hospital stay. Don’t FORGET that you and your family are an integral part of the CHEO team.

How is it treated? 

We are still learning what the best treatments are for MIS-C. The goal of early treatment is to “turn off” inflammation caused by an uncharacteristic over activation of your immune system. “Re-setting” the immune system helps reduce the risk of long-term complications. You may also have received antibiotics, until an infection was ruled out.

Medications

Intravenous immunoglobulin (IVIG)

• contains a mix of antibodies (a protein that protects the body against illness)
• are taken from donated blood products
• safe and has very few side effects

Corticosteroids (steroids)

• can be given via a intravenous (IV) or by mouth
• may be given with other medications to protect the stomach lining
• can make your child slightly more prone to infection if given in high doses
• should not be stopped suddenly - your child will likely need to "taper" off slowly until they can produce their own steroids
• children feeling ill after stopping steroids should be seen by their doctor 

Aspirin

• reduces blood clot formation
• usually stopped after six weeks if there are no effects of inflammation on your child's heart

Blood thinners

• also known as anticoagulents
• may have been used to help prevent blood clots which can happen in MIS-C, although rare
• can be given daily by injections but other forms can be given by IV if needed

Other anti-inflammatory medications

When inflammation is difficult to “turn down” despite the listed medications, your child may have needed other treatments to “switch off” symptoms. Most commonly used is Anakinra or Tocilizumab. Both these treatments block chemicals in the blood that are part of the body’s inflammatory process. 

Managing MIS-C at home

The CHEO team will be with you through every step of your recovery and close follow-up will be arranged after you go home. Most children and youth will make a full recovery before going home from hospital or will recover soon after leaving.

You should continue to monitor them closely, since MIS-C can affect both mind and body equally. It is important that your child rests and recovers and normalizes life after their stay at CHEO. Many things have changed since COVID-19, disrupting the day-to-day life of children and teenagers. It is important that you have the opportunity to talk to your child about their experiences. 

Symptoms you may notice

• muscle weakness and fatigue
• concentration troubles
• angry outbursts
• up and down emotions
• skin peeling
• hearing challenges
• breathing problems
• abdominal pains
• appetite changes
• loose stools
• hair loss/thinning
• brain fog
• headaches
• sleeping difficulties
• no sense of smell
• swallowing/speech difficulties
• rashes
• tingling in hands/feet 

Is my child immune now?

Most people with MIS-C have some level of immunity against getting COVID-19 again but it won't protect them forever. From what we know, it's unlikely they will get MIS-C twice. If your child shows any of the same symptoms, bring them to the hospital to be seen again and let them know about your past history of MIS-C. 

Can my child return to school?

Yes, once discharged from hospital your child can go back to school. However, you may want to take a gradual approach to returning to school until they are fully recovered.

Consider a phased return to school, incrementally increasing activity to match energy levels. Prioritise a return to core educational subjects. Pacing is a strategy to manage energy levels and avoid a boom/bust cycle. It involves alternating periods of activity with rest breaks before the onset of significant fatigue. Activities have different physical, cognitive, emotional and social demands. Alternate cognitive activities such as school work with a social/physical activity such as art or a movement break.

What do I tell my friends and family?

It is up to you how much you and your child want to share your experience with others. Talking about your experience can be therapeutic. It is important that friends and family support each other in these difficult times.

Special precautions to take

• Your child should avoid direct contact with anyone with chickenpox, measles or tuberculosis. If contact does occur, tell your doctor as additional steps may need to be taken to protect them against infection.
• There is no need to isolate once recovered from MIS-C. 
• The medications for MIS-C can affect the way your child responds to vaccinations. Talk to your doctor about the optimal timing of vaccinations. It is important that you keep up-to-date with routine vaccinations when appropriate.
• After recovering from MIS-C your child should wait three months before getting a COVID-19 vaccine.
• We recommend that your child gets the flu shot during the flu season.