I am almost 22 years old now but when I was 17 I had a heart attack out of the blue and once I was at the hospital they found it was Kawasaki disease. I was always dignosed with mono or strep throat my whole life, I had triple bypass and everything is fine now. I have also had horrible migraines my whole life until after the surgery. I have not had one in 5 years but on Christmas, I had some sort of an episode where my body clinched up and I could not move, it passed after about 20 min. but the docs said that it was called basal migraines and not a seizure, my cardiologist said everything is fine and it was a fluke thing. There is a new study they looks at the connection between a heart mummer and headaches. Anyway I only know one other person with Kawasaki disease and he has never had a problem and he is 35 years old. I would love some more information if anyone has any. My email is Dnixon1987@gmail.com

just a little note to say i love the show.i wanted to tell you all that my youngest son had kawasaki at the age of 9. it took forever for someone to figure out what he had.by the grace of god one of his doctors thought he had kawasaki but she kept getting ruled out. but sure enough thats what he had and it was horrible.he would go from being okay to crippled.it effected his walking and skin and mouth etc.at first they said only infants could get it ,but i see that that could be changed.now he is 18 and such a wonderful son,thank goodness for that one headstrong wonderful doctor.rodluvscin@charter.net

My oldest daughter died in 1996 at her 15th birthday party without any
warning.  We found out thru the autopsy it was her heart and a year
later my oldest son was diagnosed with an enlarged heart just like her.  He now has a defibrillator (his 3rd) and is coping well.  I
was stunned to learn of the symptoms of Kawasaki disease on your show because both
of my 2 older children had a strange episode when they were around 8
and 6 years old.  They ran a high temp. and had bizarre ulcers in their
mouths, so bad they could hardly swallow and couldn’t eat.  Each time
it lasted atleast a week.  They were treated at the doctors office of
course but, no mention of Kawasaki disease or the need to check their
heart.  After my son was diagnosed with his heart condition, still no
one asked me about the possibilities of Kawasaki disease or strange,
severe illnesses as a child.  I would like to learn more about this
disease to see if it is actually what my 2 older children have, so that
I no longer have to worry about my 2 younger children. I think this show may have helped us finally put a name on the heart disease my son and daughter have.

Our youngest son, now 4.5 yrs old, was daignosed with Kawasaki Disease when he was 2.5 yrs old. At the time I had only heard of KD once, long before our sons ordel.  His symptoms started like a cold and then fever. The doctor he saw dx him with an ear infection, but said there could be a 1% chance it could be something called Kawasaki’s. At the time his eyes had already started to turn red, but just thought it was from not feeling well. After starting perscription for ear infection he broke out in 3 different rashes and still a fever. Our first trip to the ER ended with drs saying it was reaction to meds and most likely had an influenza.  Gave new antibiotic and told to use over the counter for rash.  Our 2 visited to the ER came about because he started to not want to walk (his feet had swelled). He also had strawberry tongue, swollen lips, swollen lymph nodes in neck, & swollen hands. Finally after some blood work and tests he was admitted for Kawasaki and treated with IVIG (blood product).  He has had a couple of echocardiograms since then, left coronary was slightly enlarged both times, but not bad enough for medicine and could be growth related.  He also spent a year on 1/2 a baby aspirin.  He is a happy 4.5 year old now, but when he gets upset and cries his eyes and lips both get red.  We resently found he has hearing loss in both ears, but not sure how.  In rare cases Sensorineural hearing loss can happen.  For those that want more information or support from others dealing with this mysterious disease, go to www.kdforum.org. or www.kdfoundation.org

Our son was diagnosed with Kawasaki Disease at age 5.  We had taken him in to the Pediatrician every other day for 5 days with a high fever and lethargy.  On day 5, (the third doctor visit) he developed a rash on his torso sometime after we left our home for the appointment and the time that the doctor saw him.  She sent him for some lab tests to rule out the obvious offenders.  Later that afternoon, the Pediatrician called our home (this was a little startling, as usually the nurse returns phone calls, etc.).  She indicated that she suspected Kawasaki and directed us to the Children’s Hospital, where they would admit us through the ER and to connect us with the Ped. Cardiologist.

By the time we arrived there, his eyes had turned red, as was his tongue.  There was some swelling of his spleen, as well.

Overnight, he was administered the IVIG.  By morning, he was a new kid.  He had an echo at the hospital prior to dismissal, with instructions for aspirin therapy and a follow up appointment with the Cardiologist.

Since then, we do a follow up with the Cardiologist every three years, and in April 2008 had a stress test, as a baseline.  He tested above average for a child his age, and to date has had no lasting repercussions from the KD.

Thank goodness for our Pediatrician, who recognized the rash and caught this in its early stages.  

He is now a healthy 9 year old, who participates in sports and other physical activities and has had no lasting effects from the disease.  

My son Dante was diagnosed with Kawaski Disease when he was 2. We were not too lucky with the diagnoses as while spending 2 weeks in the hospital the doctor continues to tell us it was just a virus and would go away on it’s own. Once Dante started to finally eat ( a bite of a cookie) the doctor came in and said “okay you can go home now, he is eating” I could not believe what I was hearing, my son still has a fever, rash, strawberry tongue, blisters and was swollen in every place possible- yet you want to send us home because he ate a piece of cookie. The doctor suggested it could be KD – but never did perform any tests – we did many ultra sounds on the belly – but not near the heart.
I even looked up KD while away from my sons bedside – I wrote down the exact dates that he had the symptoms – but the Dr said – no cannot be.
On the day we were discharged, Dante’s fingers and feet began to peel – the doctor just dismissed us, as if this was normal – we were still not diagnosed with KD
Dante did not recieve the IVIG – as it was too late. When the admitting doctor went on holidays, I brought him to see the 2nd doctor that visited him at the hospital, he immediatley sent us up for a cardio exam – and within a min. of the test – she said there it is there is the damage.
Dante continues to see a cardio. every year (we use to go every month, then 3 months then 6 months), he is also required to take 1 children’s asprin daily. Dante’s coronary art. are enlarged, as well as some closed. So far Dante has been on asprin for 4 years and will continue into adulthood.
The hardest part could still come, Dante loves hockey, we are not sure how long we will be able to continue to play as he reaches his teen years – due tot he stress it could cause to his heart.
It was great to see a show about this disease – I would have liked to see you talk a little bit about children who are older and still living with the disease.

I am happy to see you covering this illness. My son had Kawasaki about he same time as Jett. i saw Kelly on Tv talking about it. I had never heard of it before we got it. My son presented with lymph nodes the size of a golf ball. He was put in the hospital after two days. We couldn’t break the fever, his lips were swollen and he could not eat or swollow. There were many doctors trying to determine what happened. He got very red eyes and a nurse asked me if he had a rash, I said no. Fifteen minutes later he got the rash and I knew she knew what he had. She actually called the doctors and diagnosed him. She said they get a few cases a year. After MRI, CT scans, every blood test available, we were lucky enough to have a nurse who recognized it. He is now 16 and has never had any further problems from it. It was suggested that he have another eco cardiogram before he started sports just to be sure and it came out fine. We were lucky to catch it early, Your covering this topic could save a child serious complications. Tell Brian his beautiful son will be fine. My son is a happy, healthy sixteen year old. It is the most frightening thing while it is happening, but it does go away. I warn all young mothers about it. I think there are a lot more kids who get it and just don’t know it and suffer the consequences later. Thanks again.

Unfortunately one of the most common threads shared by everyone posting on this subject is the difficulty in which obtaining a diagnosis occurred. Back in 1989, our daughter, then age 2, came down with all the symptoms listed just before Christmas. Compounding the problem was our city was experiencing a rare hard freeze for the Texas coast. Unable to make it to our regular pediatrician’s office we saw a local doctor who came well endorsed. He diagnosed her as having the flu and nothing to be overly concened about. My wife was first to realize his diagnosis couldnt have been further from accurate. As a mother of three other children she had the mother’s intuition that was our saving grace. We chanced the weather and made it to our regular pediatrician. He examined her less than 20 minutes before making arrangements to have her admitted to Texas Childrens Hospital – with a diagnosis of KD!

Less than 8 hours later his diagnosis and our worst fear was confirmed. However, just as described in this segment, following the mega doses of IV treatment along with asprin, our baby girl was ready to be discharged – or so we thought. Because Texas Children is a teaching hospital, our daughter was examined by several resident physicians. One of them is my hero for life. While conducting an exam, he questioned if we were aware of a solid mass he felt in her abdomen. Now, after the emotional rollercoaster of dealing with KD over the past 10 days, we were now made aware of an even greater risk to her young life. Texas Childrens Chief Surgeon met with us within the hour and without the benefit of further testing was able to inform us our daughter had a solid tumor on her liver, the diagnosis: Hepatoblastoma.

In 10 days we went through her being deathly sick, to feeling much better, to now facing the need for life threatening surgery and the unknown of what further treatment would be required sinced the histology of the tumor was felt to be unfavorable. Her tumor had grown from the size of a pea to a small grapefruit in the time we were in the hospital.

So, ultimately we still don’t know if her coming down with KD was a curse or a blessiing. Certainly it alone is life threateninig and the treatment for KD itself actually increased her risk in surgery. We had to hope the asprin used to help would not take her through blood loss.

Our story does have a BLESSED ending. Now 21 years old, our daughter is a senior in college and is self driven to complete a medical degree that will ultimately allow her to give back to children like her. In closing, never, never let your own intuition be downplayed any physician!

One last item: Our case was investigated by the Atlanta Center for Disease Control. We had not recently traveled outside the US, are not of Asian origin, nor had we recently been exposed to anyone who had. The only commonality found was just prior to her KD, we had our home carpet professionally cleaned and there was a possibility our daughter had walked across the carpet before it was completely dry. We always stress to friends with small children to NOT take chances of this type exposure. Like others, I too would like to have seen the program show follow children.

Kelly Preston had talked about the rug cleaning aspect of Kawasaki. At the time my son got it I was always getting the rugs cleaned thinking I was keeping the house clean. After watching her talk about it I reduced the amount of rug cleaning and waited until it was dry to walk on it. They don’t know what causes it, but there may be a connection, so no reason to take a chance. Lerooo is correct. My son had it ten years ago and just recently my nephew’s son got it. I have never seen a genetic connection, but they are doing research on it at Boston’s Children’s hospital.

I am Dad of a 21 yr. old who when he was 4 1/2 yrs. old came down with Kawasaki Syndrome after his pediatrican treated him for a severe ear infection. That same Dr. had an uncomfortable feeling that something else was going on with my son. Since we are from NW Indiana not far from Chicago, Dr., who was afiliated with Uniersity of Chicago Children’s Hospital sent us to an Interanl Disease specialist who diagnosed it on the spot as Kawasaki. My son spent about ten days in the hospital being treated via IV. He had the rash, swollen glands, high fever, the whole ten yards. Follwing that hospital stay prior to letting him come home, they did an Eco Cardiogram and cleared him from heart or artery damage. To our amazement, the next year almost to the day, he came down with Kawasaki a second time!!! A very rare happening. We went back to Chicago and he again was in the hospital for almost two full weeks, this time Kawasaki did some heart damage, and left an anerisum on his aorta, the Eco showed. His story was written up in the New England Journal of Medicine. Again he received the IV treatment, and was doing good until we were were told about the aorta problem. He was not allowed to play any sports and keep his out play time to a minimum. After starting school his play time was monitored and limited. He was frustrated with that, so in second grade we asked his Dr. if he could play more, the Dr. said you need to have him wear a chest protector, so I got him a hockey vest, cut off the shoulder pads and he wore that under his t-shirt for gym class. He proved to be a gifted athlete so that added to his frustration of why he couldn’t play harder and longer at recess or in gym class. Ha had an Eco every year and it showed finally by his twelth birtday the anerisum was growing smaller as he grew. He was then allowed to play little league baseball but still had to wear a chest protector. He pushed himself a bit much but as a twelve year-old made the All-Star Team and was so proud, he played on the All-Stars three years in a row. Then in middle school he returned to the hospital for his annual Eco, this time it revealed all of the anurisum had gone away and his video ended up being reviewed by a panel of Drs. They all concurred his was fit as a fiddle! LOL I cried like a baby! My son contiuned to excell in high school at baseball, his first love, basketball and volley ball. Today he is a junior in college, with a 3.5 gpa, and is the starting second baseman for the baseball team a Div 3 level school.

I am not Asian, nor have ever been to Asia, I have heard more than once that it has to do with new carpet or carpet cleaning. I do remember when i was little and we had new carpet put in and playing on it. KD may slow me down but it won’t bring me down! if anyone lives in or near Detroit with KD let me know. Lets try to get the word out about KD.

I live in Windsor and am the proud mother of a KD child. He was diagnosed and treated a month ago and so far is doing wonderful! His next Echo is schedualed for October 14th.
I agree we need to get the word out about this disease.

I know your son will be fine.  Mine just had another echo as a precaution before starting high school sports and he is fine.  The cardiologist said the prognosis is great for those who catch it early.  When I see stories of these kids collapsing on the football field at 15 I wonder if they had Kawasaki as a child and just did not know it.  The more people who are aware of it the better.