2022 UCSD KD Parent Symposium Q&A Session 

Watch the annual Kawasaki Disease Parent Symposium hosted by the University of California San Diego, Kawasaki Disease Research Center via the link below, or scroll down to read the transcribed questions and answers asked during the Q&A session 1.


Q&A Session 1- Kawasaki Disease Parent Symposium, October 29, 2022 – Transcript

1. If we can expand on the idea of what a “febrile” control patient is, what are some
examples of these patients’ diagnoses?

If your child has a fever and one of the five criteria for Kawasaki Disease so could be a
big lymph node in the neck it could be bloodshot eyes it could be a rash or could be some
combination of those are red lips swollen hands and feet if they have something that looks a little
bit like Kawasaki Disease the child will be offered enrollment as a member of the study.

2. What is Anakinra’s intended use, how is it administered, and can it be used as a
single-dose treatment?

Anakinra actually disintegrates very quickly, and so it really only lasts a little while less
than a day in the body, so sometimes it needs to be administered multiple times a day which
makes the IV dosing easier. In our city, we gave it for about 2 to 6 weeks and now our current
use in the hospital for a child that’s on Anakinra will be to administer it while they’re doing their
hospitalization stay, which can be any number of days. Anakinra is actually difficult to give as an
outpatient drug outside the study that we did because of the lack of FDA approval, specifically
for KD, so we’re now trying to find other drugs that work like Anakinra but last longer in the
body to see if that’s an option to last a little bit longer to affect the inflammation.

3. Is the biValent booster safe?

Yes, the biValent booster is safe. The COVID vaccine in children helps to prevent MIS-C.

4. Are there any lung effects of Kawasaki DIsease that we should be aware of?

Fortunately, the lungs are not a majorly affected organ.

5. What age is recommended for the calcium tests?

Calcium deposition is first reported after a decade of Kawasaki Disease. The most
important patients to get calcium tests are those who endured giant or medium aneurysms. CT
calcium tests are most important for patients with significant coronary artery involvement.
Typically 13-16 years of age as the first time.

6. Is it recommended to examine one that had Kawasaki disease over 10 years ago now
that there is testing and data that was not there 10 years ago?
If you are aware of any heart abnormalities during or after diagnosis or are not sure, one
should automatically order a CT calcium score. If it is negative, then it is unlikely that one had
bad damage to their vessels. The CT calcium scores tell if one had calcium deposition, which is
important to know if unaware of the status of your vessels.

7. Is there anyone I can contact by phone at a Boston Hospital?
There is a Kawasaki group at Boston Children’s Hospital led by Dr. Jane Newberger.

8. There has been news about COVID causing heart issues in people who had COVID.

If a Kawasaki patient who had no heart involvement had COVID, should they be
checked or monitored for possible heart issues from COVID? What signs should
they look for?

COVID can cause heart inflammation in general. It does not seem to affect Kawasaki
patients any differently than the general population. If your COVID illness was mild– able to
stay home, fever, headache, cold– we don’t screen any of those children. If your course was
severe like you needed to go to the emergency room or you were admitted to the hospital, or had
a diagnosis of myocarditis; those patients will need to come back to Cardiology.

9. How are occlusion aneurysms treated in adolescence?

In all of our patients that have persistent coronary aneurysms; they are all on
anticoagulation, so if the vessels are very big and you still have giant or large aneurysms, then
we always put you on an antiplatelet agent such as aspirin or Plavix. We put most of our patients
on Apixaban which is an oral medication that keeps the blood thin so many many places in the
world use something like Coumadin, which is a blood thinner that we use for valve replacements
and things like that. We here use newer oral agents that keep the blood thin and don’t require a lot
of lab monitoring, so if you have large aneurysms, we treat you with antiplatelet agents, systemic
anticoagulation, and atorvastatin statin; to help the vessels be as healthy as they can be.

10. Any updates on kids that took Lipitor with Kawasaki Disease that had no

We do. There is this rare time, where now that we’re doing CT scans and adolescence, so
for instance, let’s say you have a 15-year old who had some heart involvement but it got better
and we think it’s all remodeled. There’s times where we bring those kids in for CT scans and find
out that the vessels aren’t quite normal, so the echo only really shows the very beginning part of
the vessel,but in the CT scan we get the benefit of seeing everything and so there’s times we’ve
looked at the CT scan and then you know what like they don’t look quite normal they’re just
mildly dilated or they’re mildly kind of something we say “ectatic” like the edges aren’t very
clear. We do put those patients on Lipitor and we hope that over time that their vessels will
become healthier, have the normal reactivity, and perhaps remodel a little bit. We don’t have that
data yet because now that we’re using CT scans more frequently. You know, hopefully, we can
get that data going forward but we do tend to recommend Lipitor and, hopefully, in the future,
we’ll have better information about what happens.

11. Why is Infliximab given only once?

The way that we designed that initial study was based on the pharmacology of infliximab
which seems to last in the body somewhere between three to five weeks so the thought um
initially and that has really proven probably to be right is that that’s really the point in which we
can make the most impact in terms of decreasing coronary artery inflammation because most of
that inflammation happens initially and we do not give a second dose of infliximab. I know that
there was a family there that said that they did get a second treatment and there may have been
some issues with allergies. The issues with allergies do not happen with the single dose but
because this is an antibody you can develop an allergy to that treatment. I mean that’s well
reported in other diseases where we give more than one dose.

12. What is Doxycycline?

Doxycycline is an antibiotic that has an anti-inflammatory process. There’s an ongoing
study in Hawaii that as far as I know was still enrolling and looking at also having a decrease in
inflammation using doxy and KD patients but I do not believe that that has actually finally been

13. Someone submitted a question asking about “mtor” Inhibitors?

Used in all different kinds of diseases but also again to attack in the inflammatory process
for a study out of Melbourne: someone was asking if I believe we’re doing any work here with
that I’m not aware of anything being done in the U.S.

14. Is the use of ethnic data used in the collection of the lab results for Kid Match as
well as coronary artery diameter?

We do collect that data and we use that as part of something called sensitivity analysis
which is basically saying uh is the performance replicated across different groups.

15. How much benefit will that add to the kinds of things that we already have to
diagnose KD?

We don’t know.

16. Are there any occurrences of Kawasaki Disease aneurysms in adolescents?

So typically I’m not exactly sure how to interpret this question. I’m going to answer it
both ways. Potentially so if you have an aneurysm and it has been remodeled. We have not seen
that then become an aneurysm again, so we have seen perhaps it’s not completely remodeled
when we repeat CT scans in adolescents but we don’t all of a sudden see new aneurysms so in
that sense the aneurysms like don’t recur.

17. Can children develop KD again in adolescence?

There is a recurrence rate of KD within 6-8 weeks, but it is very low and does not tend to
occur in adolescence.

18. Does calcium build up due to Warfarin use?

Warfarin is rat poison and is the generic term for Coumadin. Coumadin is the brand name
so many many patients are on these medicines like tens and hundreds of thousands because of
atrial fibrillation valve replacement. There’s lots of reasons to use Warfarin as an adult and in
children. We used to use it due to being the only way to thin the blood well enough when you
had a giant aneurysm. Now one could use a shot of Lovenox or Heparin, but the shot has to be
given twice a day so that’s why we moved towards these newer oral medications that you take by
your mouth like you crush a pill and put it in water or whatever and amazingly here I will say
there are not that many patients with residual giant aneurysms it really is a very small number of
patients like we can count them on two hands the number of patients that we follow in pediatrics
with persistent aneurysm. I think that’s a testament to how aggressive the therapy is up front
which is why we’re trying to get the message out across the world and the country, right, because
even when you move slightly east of here, anywhere, I don’t know that the treatment end is at
aggressive, so in our persistent aneurysm patient, so we don’t use Warfarin, so we don’t see
calcium buildup in our patients because we don’t use it. In all these other patients that are
chronically on it for valve disorders and things like that, because I also followed his mechanical
valves, we absolutely do you see calcium buildup and it can be impressive and you can do a
chest x-ray on a 15 year old has been on coumadin for 8 years and their entire bronchial tree
lights up of calcium, so there is a scientific reason why calcium buildup on patients with
Warfarin, and that’s like a whole other topic that we just gave in Japan talking about why it’s
important to find alternatives to warfarin use.

19. For CT calcium scores, is it a regular CT or a 5/12 CT?

If you go to get a CT calcium score it is a different type of CT in terms of how they
acquire the images and it is if you go for a CT angiogram so they can use similar machines but
it’s a different protocol it’s like a flash scan it just looks for calcium so I don’t know exactly but it
has to be ordered a CT calcium score so the physician ordering it after a CT calcium score.

20. I had KD at the age of one, I had one giant aneurysm and have been on medication
since. I am 15 now. What are the chances of required surgery, heart attack, etc.
further into my lifetime?

There is a low risk of heart attacks with proper counseling on what you can and cannot do
and medical therapy, and it is a rare thing to need surgery due to this issue.

21. What size Z-score would be considered an aneurysm?

A small aneurysm is z-scores of plus 2.5 to plus five. A medium aneurysm is plus five to
plus ten and then a larger giant aneurysm is greater than plus 10 and we do have patients with
z-scores of plus 20 and things like that in infancy so it can go as high as it needs to go small,
medium, and large.