COVID-19 FAQS: Juvenile Arthritis

UPDATED 10/14/22

News, scientific understanding and guidelines about COVID-19 are continually evolving. As such, please note that some information on this page may have changed since its original publication date. 

Question: What are the vaccine guidelines for children with JA?

A: The FDA granted emergency use authorizations to the Moderna and Pfizer-BioNtech vaccines for children as young as six months of age. The FDA also authorized use of the Novavax protein subunit vaccine for children 12 years and older.

Pfizer- BioNtech Vaccine Recommendations: 

Children 6 months to 4 years old: 

• Receive a three-dose primary vaccine series.
• Each dose is 1/10th the size of the adult dose.
• The first two doses are three weeks apart, and the last dose is 8 weeks after the second. All three doses are critical to develop an adequate immune response.
• No boosters are recommended yet for children in this age group. 

Children 5 to 17 years old:

• Receive a two-dose primary series, with shots spaced three weeks apart.
• Severely or moderately immunocompromised children, including some children with JA, should receive three doses of the Pfizer-BioNtech vaccine as a part of their primary vaccine series. The third dose is given 8 weeks after the second shot.
• For children 5 to 11, each dose is 1/3rd of the adult dose.
• Children 12 and older receive the adult dose.
• The CDC recommends that all children in this age group receive a booster (third shot) 5 months after their second shot. 
• Immunocompromised patients 5 and older may receive a booster (fourth shot) at least three months after their third dose.
• Immunocompromised patients 12 and older may receive a 2nd booster (fifth shot) at least four months after their fourth dose. 
• Children 5 and older are eligible to recieve Pfizer’s updated Omicron-specific vaccine. Anna Gironella, MD, pediatric rheumatologist with Hackensack Meridian Health, recommends that her patients follow the CDC's recommendations for when to get an Omicron-booster shot. That is, children 5 and over who have received Pfizer's primary series, should get a Pfizer Omicron-specific booster:
  • If it's been at least 2 months since the child's last vaccination.
  • If it's been at least 3 months since the child's last COVID-19 infection.
  • At least 2 weeks before projected travel.

As always, talk to your child's doctor about the best time to get boosted, especially with respect to their disease activity and immunosuppressive therapy. Certain medications may need to be temporarily held so that your child's body is able to mount an optimal vaccine response.

Moderna Vaccine Recommendations:

Children 6 months to 5 years old:

• Receive a two-dose primary series, four weeks apart.
• For moderately or severely immunocompromised children, a three-dose primary series is recommended. The third shot is given four weeks after the second shot.
• Each dose is about a quarter of the dose given to adults.
• No boosters are recommended for children in this age group at this time.

Children 6 to 11 years old:

• Receive a two-dose primary series, four weeks apart.
• Receive ½ of the adult dose.
• Children 12 and older receive the adult dose.
• For moderately or severely immunocompromised children, a three-dose primary series is recommended. The third shot is given four weeks after the second shot.
• Children 6 and older are eligible to recieve Moderna's updated Omicron-specific vaccine. Anna Gironella, MD, pediatric rheumatologist with Hackensack Meridian Health, recommends that her patients follow the CDC's recommendations for when to get an Omicron-booster shot. That is, children 6 and over who have received Moderna's primary series, should get a Moderna Omicron-specific booster:
  • If it's been at least 2 months since the child's last vaccination.
  • If it's been at least 3 months since the child's last COVID-19 infection.
  • At least 2 weeks before projected travel.

As always, talk to your child's doctor about the best time to get boosted, especially with respect to their disease activity and immunosuppressive therapy. Certain medications may need to be temporarily held so that your child's body is able to mount an optimal vaccine response.

Novavax Vaccine Recommendations: 

Children 12 to 17 years old:

• Receive a two-dose primary series, 3 weeks apart.
• No boosters are recommended for children in this age group at this time.

To find locations that offer Covid vaccines for younger children, parents are encouraged to call their child’s doctor, check local health department websites or go to Vaccines.gov. For a complete guide to vaccine recommendations, including those for children who are immunocompromised, visit the CDC recommendations, here.

Question: Are vaccines safe for children with JA?

A: Experts say the vaccines are safe and effective for children despite reports of a rare side effect that cause inflammation of the heart (myocarditis). Adolescent and teenage males over the age of 16 seem to be most at risk, and most cases happen after the second dose. 

While this side effect may worry parents, getting COVID-19 is far riskier than any potential side effect of getting the vaccine, says Randy Cron, MD, PhD, Director of Pediatric Rheumatology at the University of Alabama at Birmingham. 

And the side effect is very rare. CDC researchers estimate that out of a million-second doses given to boys ages 12 to 17, the vaccines might cause a maximum of 70 myocarditis cases. In comparison, a million doses would prevent 5,700 infections, 215 hospitalizations and two deaths as a result of COVID-19. Another study found that there are roughly 11 cases of myocarditis for every 100,000 vaccinated male patients ages 16 to 29.

In the clinical trials for younger children (6 months to 4 years for Pfizer and 6 months to 5 years for Moderna), there were no cases of myocarditis.

COVID-19 infections are also more likely to cause heart inflammation and serious heart problems.

The risk of heart complications from COVID-19, particularly related to MIS-C, a multisystem inflammatory complication seen in children, is significantly greater than the vaccine risk, says Monica Friedman, DO, Chief of Pediatric Rheumatology at Arnold Palmer Hospital for Children in Orlando.

MIS-C caused by COVID-19 can also lead to developing cardiac dysfunction and coronary artery aneurysms, which is another reason why vaccines are so important, she says.

A COVID-19 infection can also infect the heart muscle and lining of the blood vessels, which can cause long-term and/or lethal heart damage.

In contrast, most cases of myocarditis from a vaccine are mild, with symptoms like fatigue, chest pain and abnormal heart rhythm that clear up on their own. If medical attention is required, patients are usually easily treated and typically recover with no long-term complications.

There are also no data to suggest that children with juvenile arthritis would be more likely to have cardiac side effects from the vaccine, says David Cennimo, MD, professor of pediatric infectious disease at Rutgers New Jersey Medical School.

It’s important to note that children taking rituximab or daily glucocorticoids may not produce as strong of an immune response to the vaccine, therefore developing less protection against the virus.

Before getting your child vaccinated, discuss your child’s medications with his or her doctor. Your child’s doctor may decide to delay the timing of certain medications to enhance the immune response to the vaccine. The American College of Rheumatology has issued guidance for adults and they are currently working on guidance for children.

Question: Should my child get vaccinated even if they've already had COVID-19?

A: Yes. Vaccines have benefits that natural immunity cannot provide on its own. If your child has already been infected, getting them vaccinated, and following up with booster recommendations, is critical for increased protection against severe outcomes from newer variants in the future.

Question: What are some things I can ask of my child’s school to keep her safe?

A:  In July, the CDC updated its guidance for safely reopening schools, but there is one huge difference from last’s year’s guidance: Schools that can’t follow all the recommendations are still encouraged to return to in-person instruction anyway.

Educational rights plans, such as 504 plans and Individualized Education Plans (IEP), ensure that children with disabilities, including JA, have access to a fair and equal education. As such, parents can request reasonable accommodations for their child, which in the context of the pandemic, are those outlined in the CDC’s recommendations and beyond. These include, but are not limited to: Inquiring about the vaccination status of your child’s teachers, requesting physical distancing policies (3 ft or more), access to continued remote/virtual learning, installing enhanced ventilation systems in schools and classes, and lobbying for a more stringent hand-washing policy, says Heidi Goldsmith, ESQ, special education rights attorney and founder of Bradley-Goldsmith Law.

Children with JA are also entitled to the same quality support and services as if they were attending in person, which means parents can request that a vaccinated teacher come to the house, says Goldsmith.

Universal masking can also be requested, but due to political reasons, it may be more challenging to obtain. If your child’s school district prohibits mask mandates, you may request that your child be placed in another school, private or public, that has a universal masking policy, says Goldsmith. 

The best way to make a case for your child is to obtain a letter from a doctor, outlining your child’s conditions and exactly why they are requesting those accommodations, says Goldsmith. Also, start early and be persistent. If you don’t hear back from your child’s school administrator within 48 hours, keep calling and emailing to set up a meeting, she says.

And if your child’s accommodations are denied, be prepared to dispute.  

Get more tips from Goldsmith about securing reasonable accommodations for your child by listening to the Back to School During COVID: Part 2 podcast or viewing the educational rights webinar here.

Question: How can I best protect my child?

A: The best way to protect your child from COVID-19 is to get them vaccinated. All children 6 months and older are eligible for COVID vaccines. Immunocompromised children, including some with JA, may be eligible for additional booster doses.  

With the highly contagious Omicron variant on the rise, some parents of immunocompromised children may want to play it safe, continue to mask up in public and limit how much time their children spend in crowded indoor areas.

If you are unable to work from home or must venture out often, be sure to give others lots of space and wear a mask. You may also be eligible for benefits, including extended medical family leave and unemployment benefits, under the Families First Coronavirus Response Act (FFCRA) or the Coronavirus Aid, Relief and Economic Security Act (CARES). For more information, click here. 

Importantly, keeping your child’s disease well-controlled is critical to reducing your child’s infection risk and keeping him or her healthy. Continue to administer your child’s medications as prescribed and do your best to ensure your child keeps up with healthy behaviors, like getting regular exercise, getting plenty of rest and eating a balanced diet.

Talk to your child’s doctor about how to best protect your child, including which safety measures to keep in place, even if your family is fully vaccinated.

Question: Is my child with juvenile idiopathic arthritis (JIA) considered "high-risk" for COVID-19 infection or complication?

A: It’s unclear. Every child is unique, and factors such as disease type, disease activity, degree of immunosuppression and organ involvement will affect the risk.

The good news is that current data suggests that children with rheumatic diseases, including those taking immunosuppressant medications, do not appear to be at a higher risk for infection or complications than other children. However, children under a year old tend to have a higher risk of complications, though this risk is still much lower than in adult populations.  

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has developed a registry to keep tabs on COVID-19 infections in pediatric rheumatic patients. This data will help health care providers learn more about the effects of the novel coronavirus on children with rheumatic disease. Learn more about the registry here and how to get involved here.  

Question: What are the symptoms of COVID-19 in children?

A: Luckily, most children with COVID-19 will either have no symptoms or only have mild symptoms, including low-grade fever cough, sore throat, sneezing, runny nose and fatigue. Others may experience more moderate symptoms including muscle aches, diarrhea, vomiting and fatigue. Some may lose their sense of smell and taste. While these symptoms may be uncomfortable, they are not necessarily signs of severe disease. Call your child’s doctor if you notice any of these symptoms. If symptoms are mild and don’t worsen, your child’s doctor will likely advise you to monitor your child’s symptoms at home, making sure your child stays well hydrated and using a fever reducer, such as acetaminophen, as needed.

On the other hand, if you notice signs of severe infection, such as rapid and labored breathing and/or bluish discoloration of the lips, seek medical care as soon as possible.

Question: Should my child stop taking immunosuppressive medication?

A: No. Stopping medication puts your child at a higher risk for disease flares, worsening symptoms and developing joint damage. This applies to all medications, including nonsteroidal anti-inflammatories, or NSAIDs, such as ibuprofen and naproxen.  

Current data shows that children on immunosuppressive medications do not have a higher risk of infection or complications, regardless of which disease-modifying medication they take.

However, certain medications may need to be temporarily stopped if your child has a confirmed infection, has been exposed to someone with a COVID-19 infection, or is experiencing common COVID-19 symptoms such as fever, dry cough and shortness of breath. But never stop or change your child’s medication dosage without calling or consulting a doctor. This is especially important with corticosteroids, which should never be stopped suddenly. For more information about medication safety for your child during COVID-19, check out these guidelines from the American College of Rheumatology.

If your child has symptoms of COVID-19 or has been exposed to the virus, contact your child’s doctor immediately. He or she will help you decide the best course of action.

Question: There is a severe childhood illness related to COVID-19 that looks like Kawasaki disease. What do experts know?

A:  The illness, called a multi-system inflammatory syndrome, or MIS-C for short, and leads to a potentially dangerous state of extreme inflammation. It mostly affects children and teens and looks like Kawasaki disease, an arthritis-related rheumatic disease that occurs mostly in children.

The illness almost always presents with a high fever for several days. Other symptoms may include skin rash, red eyes, redness or swelling of the hands and feet, pain in the stomach, confusion, bluish lips and difficultly staying awake. If you notice any of these symptoms in your child, seek emergency care immediately.

Though serious, it’s worth noting that this complication is still very rare. Most children who get COVID-19 will recover without experiencing serious adverse effects. For more information about MIS-C and what to look for, click here.

Hear firsthand accounts of how juvenile arthritis affects lives. Warning: inspiration ahead!