At the very start of this global pandemic (if fact before it was even declared an actual pandemic), I know that many Kawasaki disease parents were already beginning to panic. As news out of China and then Europe started to ramp up about a novel coronavirus, KD parents were hotly discussing it in the online support groups and raising their concerns with their doctors.
Reports that those with underlying health conditions may have a more severe case of the coronavirus left many KD parents uneasy and then reports that COVID-19 may be causing cardiac damage made all KD parents take pause. Things then went from bad to worse when news from the UK surfaced about an inflammatory illness that was emerging in children, which was likened to Kawasaki disease. At this point it was all out pandemonium in the online Kawasaki disease parent and patient community.
I know that Kawasaki disease experts and organizations have done their best to provide reassurance and comfort based on their KD expertise and what data they have available. We appreciate their efforts as they continue to collaborate and gather information in an attempt to provide some answers to the many questions surrounding this inflammatory illness and its possible link to Kawasaki disease. However, I would be lying if I did not admit that I, like I believe most KD parents/survivors, am still very apprehensive and have not found much solace in the statements provided by those who have the greatest knowledge of KD and access to the most accurate information about this evolving situation. Let me be clear: I am not doubting the expertise or integrity of these KD specialists or the validity of their answers. I am, however, sharing the truth about KD parents, our anxiety and the reasons why this pandemic has all of us on edge.
Reason one: Fear of the unknown
Many KD parents had never heard of the term Kawasaki disease until their child was diagnosed with it. Most of us were taken by surprise by this mystery illness that seemingly appeared out of nowhere and plunged us headfirst into a nightmare. A disease we never knew existed managed to swiftly threaten the health of our children and sadly, permanently changed the lives of some of them. Many families have never fully recovered from the trauma of their child's KD diagnosis and the emergence of a new virus evokes fear of another previously unknown threat endangering their child's health once again.
Reason two: It's all coming back to me now
As more studies about COVID-19 and its effects were released and reports began flooding the news sites, we started to read and hear terms that are so familiar to the KD community. First, there were many mentions of inflammation and possible genetic pre-disposition to cardiac effects. Then, news surrounding convalescent plasma treatment likely reminded many KD parents of the IVIG treatment their children received. By the time news of the multisystem inflammatory syndrome in children (MIS-C) hit, references to "a severe immune response" and then the use of the descriptor "Kawasaki disease-like" to refer to symptoms were enough to push us all over the edge. The familiarity of these terms is a reminder of things we would rather not think about and wish we never had to learn.
Reason three: Uncertainty is not our friend
After five decades of research, there is much doctors have learned about Kawasaki disease, yet there is still so much they don't know. As a KD parent you have learned to accept the uncertainty as much as possible, but it isn't always easy. Even years after a diagnosis, parents continue to wonder what triggered their child's KD. If your child did not have coronary involvement, I am sure you fear he/she will encounter heart issues when they enter adulthood. If your children have coronary aneurysms you constantly worry about what their next heart check-up will reveal. There are times when this uncertainty may lead to unfortunate events, like an unlikely second bout of Kawasaki disease or stenosis that could not be predicted. There are many additional studies that need to be conducted, more data to be collected and numerous issues yet to be investigated, that the uncertainties surrounding Kawasaki disease seem insurmountable. When the questions surrounding COVID-19 and MIS-C are added on top of all of the existing mysteries of KD, the uncertainties feel infinite. We know that the experts are providing the best advice, based on the data they have, but the fear that uncertainty breeds is difficult to repress and falling into the void of endless what-if scenarios is often impossible to circumvent.
Reason four: Rare is not rare
While the media may have lead us to believe one thing, what we should have been paying attention to is what the experts have been saying over and over: "Serious COVID-19-related illness and associated mortality among children is rare, and this newly reported condition appears to comprise only a very small proportion of these already rare, serious paediatric cases." This sounds completely reasonable and reported numbers do support this statement. However, as any KD parent will tell you, "rare" is not so rare when it happens to you. I have often kidded that Kawasaki disease parents are the most paranoid* people you will ever meet. What you need to understand is that when something happens to your child that is only supposed to affect 30 out of 100, 000 children under the age of five, you quickly come to the realization that "rare" does not equal "impossible" and letting your guard down is no longer an option.
I do want to reiterate that I am grateful for all of the doctors and researchers working tirelessly to find some answers and provide clarity. I have the utmost respect for all of them and have every confidence that in time, as more data is gathered, these experts will be able to provide further tangible guidance and enhanced peace of mind for all of us. In the meantime, I have not shared these thoughts as fodder for increased panic or as an excuse to participate in extreme behaviour to be blamed on your standing as part of the "KD parent club." Instead, I hope that these words will help others to understand why we, as a Kawasaki disease parent/survivor community, have had an adverse, dare I say, increasingly intense, reaction to this pandemic. That being said, we are strong, we have already faced difficult challenges and this too shall pass.
For me and my husband, the bottom line is that there are still many unknowns, so we are doing everything reasonably possible within our means to keep Isaiah and the rest of our family safe. While these extreme paediatric cases remain rare, I have dealt with enough “rare” in my lifetime and choose to proceed with an abundance of caution. I believe that every family must find a balance that is right for them and provides them the highest degree of comfort and peace.
I would be negligent of me, if I did also share some words of calm during this trying time. Below is the text which I shared to my blog's Facebook page to inform others and try to spread some credible information.
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[Note: All opinions are my own, based on information from credible sources.]
Many family and friends who have reached out to me over the past couple weeks regarding the recent news reports of a multi-system inflammatory illness, possibly linked with COVID-19, which has been described as similar to/linked to Kawasaki disease or Kawasaki syndrome.
I just wanted to provide some clarification around these media reports. It has not been confirmed if there is any link between Kawasaki disease and this inflammatory illness that is being seen in children. However, some of the symptoms are the same as those seen in Kawasaki disease (KD), hence the mention of "Kawasaki disease-like" symptoms.
There are many possibilities, including, but not limited to:
- KD triggered by COVID-19
- COVID-19 manifesting with these symptoms
- a new syndrome emerging (possibly related to COVID-19)
- COVID-19 and KD occurring simultaneously
Doctors will not be able to make any conclusive statements until much more data is gathered and analyzed. Sadly, right now there are more questions than answers.
I think the important takeaway is that if your child experiences any of the symptoms of this inflammatory illness and is generally unwell, please consult with a doctor as soon as possible.
With regards to Kawasaki disease, I think it is important to be aware of the symptoms now and in the future, regardless of this pandemic. (I have attached an image from Kawasaki Disease Canada with more information.) Early detection is critical and can help save a child from permanent heart damage. If your child has a fever for 5 days with at least 2 other symptoms, please consult with a doctor.
With regards to specific questions concerning Isaiah:
1) Is he more likely to develop COVID-19 or this inflammatory syndrome, because he had KD in the past?
The available evidence does not indicate that he is more likely to be affected by either, but there are no certainties.
2) Is he more at risk because he has heart damage and coronary aneurysms?
Experts are currently unsure whether or not KD patients with heart damage may be at increased risk of heart problems should they develop COVID-19. However, based on case studies in the adult population that I have reviewed, COVID-19 can be a risk to those with pre-existing heart conditions.
The bottom line is that there are still many unknowns, so we are doing everything reasonably possible within our means to keep Isaiah and the rest of our family safe. While these severe paediatric cases remain rare, I have dealt with enough “rare” in my lifetime and choose to proceed with an abundance of caution.
Stay safe everyone!
Feel free to ask me questions about the current situation, or you can also view the FAQ's on the Kawasaki Disease Canada website: https://kdcanada.org/kawasaki-disease-and-covid-19-faqs/
*Please note, my use of the term "paranoid" is not meant to undermine the seriousness of mental illness. In fact, I have seen many instances where KD parents have mentioned that they feel that they have suffered a form of post-traumatic stress disorder due to their child's KD diagnosis and hospitalization.
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