By now, you have likely heard about the Kawasaki Syndrome like condition that has been linked to the virus that causes COVID-19. It is called Pediatric Multi-System Inflammatory Syndrome (PIMS). Before we go into an explanation of what this is and what it means, we want to emphasize something that we have been saying. COVID-19 complications in children are not common and bad outcomes are extremely rare. As time goes on, we learn more about rare events with a common infection like this. Many common infections do unusual things. While descriptions of this sounds scary, it is extremely rare. If we did a blow by blow description of influenza each year with all the rare events, the comparison would show influenza to be much more dangerous to children (the elderly is very different). That is true even though 50% of the population gets the flu vaccine and most people have excellent availability to the antiviral medications that are effective for the flu.
Terminology – some people are confused by the use of COVID-19 and SARS-CoV-2 used at the same time. Just to clear the confusion – COVID-19 is the disease that includes all the symptoms. SARS-CoV-2 is the name of the virus that causes COVID-19.
Pediatric Multi-System Inflammatory Syndrome (PIMS) is similar to Kawasaki Syndrome and Toxic Shock Syndrome, two conditions familiar to doctors. It looks similar but appears to be a separate illness. Some of the children with PIMS have tested positive to SARS-CoV-2 and some have not. We have suspected that a certain virus or bacteria is responsible for Kawasaki Syndrome but we have not found which one. As stated, the symptoms of PIMS share similar symptoms with Kawasaki Syndrome, including: A fever lasting 3-5 days with most of the following symptoms occurring at the same time:
- red cracked lips and a red tongue that looks like a strawberry
- swollen hands and feet that may also be red
- redness in the white parts of the eye (like pink eye)
- a rash on the body – a measles like rash
- enlarged lymph glands (more than 1.5 cm) on one side in the neck
- abdominal pain with symptoms like diarrhea or vomiting
What should you look for? The symptoms of PIMS occur together, not in isolation. In Kawasaki Syndrome, we look for fever of 5 days with 4 of the symptoms noted above. If PIMS is being caused by SARS-CoV-2, it is likely part of the bodies response to the virus and is not a direct result of the infection. You are also not likely contagious with the virus at the time of having the inflammation.
How is it treated? The vast majority of children with Kawasaki Syndrome respond to a treatment in the hospital with something called intravenous immunoglobulin. Once in the hospital, they are monitored to prevent a problem with the coronary arteries. This is one of the few times that children are put on aspirin and strongly urged to get the flu vaccine. (We otherwise never put children on aspirin and recommend you do not do it unless recommended by a doctor). Children with PIMS have been treated the same way as Kawasaki and the majority of children recover in Kawasaki, as they have with PIMS.
We ask you again – tamp down the fear and look past the headlines that are grabbing your attention. This includes ones like “Potentially Deadly COVID Linked Syndrome identified in up to 102 NY Kids”. We know that is easier said than done. Knowing what to look for will help you to know when to call. If this rare illness occurs in your child, we will make sure you get the proper evaluation and treatment.
ANTIBODY TESTING UPDATE: Tele-Visits (Video Visits) are available to discuss the pros and cons of testing. This is a blood test done at the lab and not a fingerprick in the office.
We have completed antibody testing for almost 100 children in the practice. We have identified a few children who have antibodies. We have every reason to believe that these children have been correctly identified. We will now open up testing for other parents who want to test children who did not have symptoms. We ask that you read the information below before making an appointment.
Clarification about COVID-19 Antibody tests. We recommend you discuss testing through a Tele-Visit (Video Visit). This can be done in the comfort of your home. Tele-Visits have no cost share for New York State Insurance companies for as long as your insurance company determines it is part of the COVID-19 crisis. This may not apply for all insurances. Please note that this is a blood test done at the lab and is not a finger prick test. This is a measure of the amount of antibodies present in the blood. Some people have requested to discuss testing during a well visit. We prefer the Tele-Visit, as we have found that this gives us the time it deserves to have a discussion about your individual testing (we have had Tele-Visits that have lasted up to 20 minutes). Please also be aware that there may be a cost share for evaluation and testing done during an office visit, including well visits. Please note that the discussion of the testing will be at the end of the visit after well visit concerns have been addressed. If the provider feels that they cannot accommodate the request they will ask the family to schedule a Tele-Visit.
What to know about antibody testing for children without symptoms
1. We do NOT recommend antibody testing for most children who did not have symptoms. We understand that there may be reasons you still want to have testing done and will be happy to review those reasons (you feel you or your family have traveled to a hot spot, or you have heard that many children can be asymptomatic or have very mild symptoms). We do not recommend routine testing, because of the low prevalence of COVID-19 in our area. Most counties in our area have a prevalence of 1-2% (Albany being one exception). When the prevalence is below 5%, the accuracy of a positive test falls and there is a higher chance of getting a false positive test. Our previous testing was to evaluate those children with symptoms, which would lead to a higher prevalence than those without symptoms. We did not recommend, nor did we test all children who had symptoms. We will take any concerns seriously and will continue to evaluate our approach. If you would like to discuss testing, please feel free to make a Tele-Visit with our office,
2. Check with your insurance about coverage for the antibody test. According to guidance issued on April 11th, found here , health plans must cover antibody tests, if the patient’s healthcare provider has evaluated the need for such testing. As we will determine that need, this should meet the federal mandate, but you should check with your insurance to be sure.
3. Before the Tele-Visit, you will fill out a questionnaire to help us determine recommendations. After that appointment, if it is agreed that the testing would be helpful, we will send an order to your lab (Labcorp or Quest). See below for details about these labs. At the time of the test, you should be symptom free to go for the testing. See below for information about each lab.
If a test is ordered after shared decision making, an electronic order will be sent to LabCorp. Please make an online appointment by clicking here . For a list of insurances that are covered, click here . After making your appointment, it is our understanding that you will be able to text the LabCorp Service Center upon your arrival. You will stay in your car and they will text you when it is time to come in. At this time, we do not know the turn around time for antibody testing.
Quest Testing (Blue Shield of NENY):
If a test is ordered after shared decision making, an order will be faxed to the Quest Service Center that you have chosen. Please click here  for a list of Service Centers. For a list of insurances that are covered, click here . After making an appointment, you will get a confirmation number that will be emailed with a scan. The number can be entered, or you can scan the code. Turn around time is predicted to be 2 days depending on volume.
Our staff have been reaching out to you. We will continue out-reach to those we have not seen or not heard from. We want to be sure you are okay during this long stay at home order. Please feel free to contact us if you are having any issues with obtaining food, feeling isolated, needed resources or other assistance. We are here to help.
We continue to do well visits as recommended by the CDC, the American Academy of Pediatrics and the Department of Health. We recommend that you continue your well visits and our schedule is open for visits over the summer. See below for information from the CDC regarding a drop in immunizations, creating the un-intended increased risk for vaccine preventable diseases.