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Conference moira::parenting_v3

Title:Parenting
Notice:READ 1.27 BEFORE WRITING
Moderator:CSC32::DUBOIS
Created:Wed May 30 1990
Last Modified:Tue May 27 1997
Last Successful Update:Fri Jun 06 1997
Number of topics:1364
Total number of notes:23848

91.0. "Kawasaki Disease" by QUARK::LIONEL (Free advice is worth every cent) Thu Jun 28 1990 18:10

In PARENTING_V2 note 1346 I told the story of my son Tom, who contracted
Kawasaki Disease when was just under 4.  This illness is considered one of the
biggest mysteries in infectious diseases today.  Few pediatricians have ever
seen it, and fewer parents are aware of it.

Last night I attended a yearly presentation by the doctors who treated Tom
at the Floating Hospital for Infants and Children in Boston, given for the
parents of children who have had Kawasaki Disease (or KD).  We learned what
the "state of the art" is in understanding KD and its treatment, and I thought
I'd summarize what I know about it here.  If you want to read the story of
Tom's treatment, you'll find it in PARENTING_V2.

Kawasaki Disease (also known as Kawasaki Syndrome), was first described in
a paper in Japan by Dr. Tomisaku Kawasaki in 1967.  The first cases in the US
were reported among the Polynesian population of Hawaii in 1974.  Since then,
it has been found around the world.  One estimate of its prevalence is that
between 3000 and 5000 children contract KD in the US each year, but since a
diagnosis of KD is not required to be reported to the Center for Disease
Control, and because many doctors in parts of the country away from the
teaching hospitals who have seen KD may not recognize it, these figures may
be low.

KD is a disease of the immune system.  Researchers don't know what causes the
illness nor do they know how children (and it is primarily children under 5
who get it) contract it.  It does not appear to be contagious in the traditional
sense, in that siblings and playmates don't tend to catch KD from a child
who has it, but it does appear in geographic clusters.   The primary symptoms
of KD are:

		Prolonged high fever of five days or more
		Swollen lymph glands
		Puffy, cracked lips
		Puffy, red tongue
		Swollen hands and feet
		A red rash that spreads over the body
		Conjunctivitis
		Irritability
		Peeling of skin on fingers and toes later

There is no test for KD - doctors make a diagnosis based on how many of the
"classic" symptoms the child exhibits, and if other illnesses have been
eliminated.  Two common illnesses that can seem similar to KD are Group A
strep infections and measles.  It also bears some resemblance to Toxic
Shock Syndrome.

Unlike AIDS, which cripples the immune system, KD causes it to go into
overdrive, wildly attacking infections that aren't there.  A KD's white cell
count increases by a thousandfold, and blood platelets also increase
tremendously.  Furthermore, these platelets are of the "sticky" variety, 
increasing the likelihood of blood clots.  Left untreated, KD damages the
heart, leading to problems later in life.  Most untreated KD patients "recover"
within 14 days, but they have a high probablility of a damaged heart and
aneurysms.  There is an early mortality rate of less than 1%.

80% of KD patients are under five years old, with a mean age of 2.9 years,
plus or minus 2.2 years.  The incidence is highest in children of Japanese
and Korean heritage.  There are "outbreaks" in the winter and early spring,
and there's also a 2-4 year cycle in the numbers.

There have been lots of theories propounded as to how kids contract KD.  One
theory which made its way into the popular press was a link to having been
exposed to carpet cleaning.  This has been studied extensively and has now
been rejected.  Other connections that didn't pan out were a history of
upper respiratory infections, contact with ill people and contact with
animals.  Two connections that are still being studied are a residence in
proximity to an open body of water, and having older siblings.  (Tom didn't
fit into any of these categories.)

Initially, the treatment prescribed was high doses of aspirin, in order to
reduce the possibility of blood clots.  A few years ago, a therapy of
intravenous gamma globulin, an immune system booster, was tested, and this
turned out to be wildly successful.  After various test programs (of which
Tom was a part), they have settled on one large dose of gamma globulin, plus
aspirin for 14 days.  This combination reduces the probability of heart
abnormalities to 4%, as compared to 20% for aspirin alone and 80% with
no treatment.

There is a recurrence rate of under 1%, with a few children having an
unusual chronic form of the illness that never really goes away.  The ratio
of males to females who contract KD is 1.3:1.  Sometimes, siblings of 
children who have had KD will contract it later, but this is very rare.

Tom was lucky in many ways.  His pediatrician (Dr. Ranjan Dandekar in Nashua)
recognized right away that she was dealing with something unfamiliar, and
connected with Drs. David Fulton and Cody Meissner of the Floating Hospital.
Tom was treated with the gamma globulin/aspirin therapy, and made a complete
recovery.  He returns periodically for follow-up visits, that include
echocardiograms and EKGs.  They have found absolutely no damage in Tom, and
two and a half years later, he is an extremely healthy and active boy.  They
will continue to see him every couple of years, as they gather data on this
mystery illness.

If you have more questions, I'll do my best to answer them or can refer you
to the staff at the Floating, who have been wonderful every step of the way.

					Steve
T.RTitleUserPersonal
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91.1info pleaseLDYBUG::CHAPSKYFri Jun 29 1990 16:137
    Steve,
    	I read in one of the university newsletters the connection between
    KD and vigorous carpet cleaning. The article was fairly recent and 
    provided pretty strong case about it. You are saying that this theory
    has been rejected. Would you happen to remember the reference to that
    study?
    Tanya
91.2QUARK::LIONELFree advice is worth every centFri Jun 29 1990 17:3416
The information I gave was from Dr. Cody Meissner of the Floating Hospital,
who with Dr. Fulton has been involved with KD research for years.  He went into
some detail on the carpet cleaning theory, detailing some of the supposed
mechanims that it might have caused KD (such as causing carpet mites to be
spread in the air and kids breathing them in).  He said that there was a VERY
large study done, and it just didn't pan out.  It turned out that a KD patient
was no more likely to have been exposed to carpet cleaning than the average
child.

I could try to get more information if you wanted. 

There is a lot of activity in the world of KD - Science News reported on
a Texas researcher who said he had developed a "sensitive screening test" for
KD.  But it appears that didn't work out either.

				Steve
91.3some many deseases, so little timeBEES::CHAPSKYMon Jul 02 1990 15:145
    Thank you for the information. My son seems to catch every possible 
    desease these days, so I am getting paranoid. If you have any more info,
    I would really appreciate a copy. My mail stop is NKS5-1/H3.
    Tanya Chapsky
    
91.4QUARK::LIONELFree advice is worth every centMon Jul 02 1990 17:2912
Re: .3

Kawasaki Disease is not something your son is likely to catch.  I provided
the information here so that parents can be aware of the disease's
existence, symptoms and treatment.  It is something to raise to your
son's pediatrician if your son has some of these symptoms and the doctor
is unable to make a diagnosis, as many doctors have not seen any cases.

In any event, there's nothing you can do until and unless your child contracts
KD, so you shouldn't worry about it further.

				Steve
91.5KAWASAKI ARTICLEOBSESS::HOLCOMBSat Jul 28 1990 16:0719
    Just read your note.  There was an article in the HARVARD MEDICAL
    SCHOOL HEALTH LETTER on Kawasaki Syndrome, February 1990 issue.
    I will send copies to those who request it.
    
    Fortunately, I read this article this past winter.  A few days later,
    my neighbor reported to me signs/symptoms that her 4 year old son was
    having.  He had a high fever.  He developed redness and swelling with a 
    rash over his body, especially his feet and hands.  His eyes, lips and mouth
    also became red and swollen.  She was about to call the pediatrician
    anyway; I gave her a copy of the above article to bring.
    He was diagnosed with Kawasaki's.  He was treated with aspirin only.
    His follow-up exams have been negative for cardiac involvement. 
    
    A few days earlier they had new furniture delivered.  The pediatrician
    was not sure, but could not rule out, if the furniture had contributed
    to the development of the disease.  The furniture did have an odor.
    (chemical)  My neighbor returned the furniture.  
    
    Susan
91.6is KD communicable ?BROKE::MAYANKDECInsane: automatic reorg generatorThu Aug 30 1990 14:4724
    I have a very relevant question that, as far as I can tell, has not been 
    answered by the notes in this topic, or in topic 1346 in Parenting_V2 :
    
    We just learnt yesterday that a girl who comes to the same daycare
    provider as our 21-month old daughter has contracted Kawasaki's disease
    and had been treated at Children's Hospital in Boston for the past week
    or 10 days.  Luckily, she is supposed to be recovering well.
    
    Now, we heard that she will be starting to come to the daycare provider
    again from next week (full time).  So, our biggest concern (and it's a 
    fear of the unknown, I admit) is : how communicable or contagious is KD?
    Is there any way of children contracting it from others who have recently
    had the disease AND are in the same house for approx 9 hours ?  What do
    people's experience, and research say about this?  
    
    And I guess the more relevant question would be : even if there is no
    "hard" evidence that it is communicable by contact or other means, is
    it better to be safe than sorry? (I guess the options we have are to
    move our child temporarily, although we feel that we shouldn't have to
    be the ones to go through the changes!!)  What would you as a parent do?
    
    thanks
    - mayank
    
91.7NUTMEG::MACDONALD_KThu Aug 30 1990 15:3112
    re:.6
    
    From what I've read, KD is *not* contagious.  I can understand your
    concerns, but if I were in your shoes I don't think I'd move my child
    from the daycare center.  If there was a chance that this little girl
    could give the disease to others, her parents probably would not send
    her to the daycare.  Since KD is a disease of the immune system, I'd
    worry more about this little girl catching something from the other
    kids.
    
    - Kathryn
    
91.8QUARK::LIONELFree advice is worth every centThu Aug 30 1990 17:4620
Re: .6

Everything I've read and have been told about KD says that it is not
contagious.  There is no evidence that children can catch KD from other
kids, even in the same family.  (Though there have been some cases of younger
kids in a family contracting KD some years after an older sibling had it.)

My son Tommy went back to daycare with full approval of the doctors who
treated him, and in the three years since, no one else in the center got
KD.

In fact, given the treatment of gamma globulin, the girl who had KD is
likely to be HEALTHIER than other kids for some months to come.  I know Tommy
didn't catch the usual colds, etc., for at least nine months after his
treatment.

From my experience and from the many reports I've read on KD, I'd say you
should not remove your child from the daycare.

					Steve
91.9ok, nice to hear that it is notBROKE::MAYANKDECInsane: automatic reorg generatorThu Aug 30 1990 23:3922
    Re: .7 and .8
    
    Thanks for the quick responses and the reassurances that KD is *not*
    contagious and that other kids in the daycare provider's home (it's not
    a center, btw) should be safe.  I am sure you understand that our worry
    stems from the fact that so little is known about this disease, and not
    from any "non-concern" for the little girl who had it.
    
    Re: .7
>    Since KD is a disease of the immune system, I'd
>    worry more about this little girl catching something from the other
>    kids.
    
    Based on what .8 says (about the little girl being HEALTHIER than the
    other kids) and the fact that KD (as opposed to AIDS) makes the immune
    system "overreact", I don't think your statement is likely to be true.
    Atleast in the short term.  And in the long run, after the child has
    recovered, she should be as "healthy" as any other kid (I know, i put
    the word in quotes, but what I read says that they are pretty much
    normal after recovery; we hope to God it is true).
    
    - mayank    
91.10another case of KD heard fromMANFAC::DIAZTue Sep 18 1990 13:0811
    My very dear friend's 14 month old son has been diagnosed with KD.
    And unfortunately, it has gone to the extreme case in that it has
    damaged his heart. Besides being worried sick over their son (who is
    in remarkable spirits for such a sick little boy) they are completely
    frustrated over the lack of information on KD and what information
    the Doctors have been giving them. They received one copy of a year
    old magazine article. I will print this note for them, but if anyone
    has anymore updated information they could give me a pointer to, I
    would really appreciate it.
    
    Thanks, Jan
91.11QUARK::LIONELFree advice is worth every centTue Sep 18 1990 15:479
Please ask your friend's doctor to contact one of the researchers who is
involved with KD study.  I'd suggest Dr. David Fulton at the Floating Hospital
for Infants and Children (part of Tufts New England Medical Center) in Boston
as a starting point.

Sadly, many pediatricians still aren't aware of the symptoms of KD enough
to catch all the cases before they progress to the stage of heart damage.

				Steve
91.12Kawaski SyndromeMR4DEC::SOLOMONWed Mar 25 1992 13:483
    Has anyone heard of Kawaski Syndrome?
    
    
91.13exMR4DEC::DMURRAYTue Apr 14 1992 20:333
   I think syndrome and disease are used interchangably to describe
    Kawasaki's.