Why researchers are not able to find the cause for KD

Personal stories of individuals and families affected by Kawasaki disease
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sam123
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Why researchers are not able to find the cause for KD

Post by sam123 » Tue Sep 09, 2014 1:50 pm

Im very surprised why researchers are not able to find the cause/source of KD.from so many years .

My son just got diagnosed and is treated for the same.He is 4yrs 7months old and very strange he has been so fit and fine till now .No fever ever nand now suddenly such a rare desease whose cause and source is also unknown.

Im really worried about his health post this so if anyone can help me with below queries:

1. If anyone knows some source through which this is occurs and why on individual is affected out of the whole lot when its a rare desease.
2.what care we need to take post treatment.
if all goes well is there anything to worry.

Frank&Edy'sMom
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Re: Why researchers are not able to find the cause for KD

Post by Frank&Edy'sMom » Tue Sep 09, 2014 9:54 pm

I have a 3 year old son who went through this a couple months ago. I researched, and researched, and got no answers. I have seen article after article on "The Cause", all different things. It has to be the most frustrating thing I've ever had to deal with. For us, it is over. My son is well, and had no heart problems, yet I still think about it all the time. I wonder if some of his behavior changes are due to Kawasaki's, or if he would have the same issues had he not had it. I wonder if I could have prevented it somehow, and if his little sister will have it someday. Every fever or rash makes us panic. I have also found the medical community unresponsive, we had posters printed about it to hang in doctors offices, I have only had one Dr. agree to hang one, and upon a return visit, it was stuffed in a file on top of a cabinet. I am always in awe at the nurses and paramedics I ask about it who have never even heard of it. As far as long term problems, read the posts on this forum. The doctors will say no problems, parents will say differently. Currently it is not mandatory to report cases to the CDC, there is a petition on change.org to try to get it mandatory if you are interested. By making it mandatory, maybe someone out there can find a connection and give us answers. Kawasaki's disease changed my family forever, it is a big deal to me, and any other parent out there who has had it tear through their family. I wish you the best of luck, and a perfect outcome. So sorry that I can't give you any real answers. Boston children's hospital might be a good place to start hunting, they do have an actual Kawasaki's team.

sam123
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Re: Why researchers are not able to find the cause for KD

Post by sam123 » Fri Sep 12, 2014 2:29 pm

So true.thanks for writing nd i too feel,the same.in India this is still very rare.nd feel so,helpless
that why my child.ive been,so,careful abt his health nd hygiene then how nd from where.
how can researchers not find a clue about this.when its happeng to so many people now.
my life seems to change totally after this .im,just concerned abt my,child nd nothing else.
pls help me.the only change is the anger fits.nd i feel so bad as im don't know how to handle the situation.

Frank&Edy'sMom
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Re: Why researchers are not able to find the cause for KD

Post by Frank&Edy'sMom » Fri Sep 12, 2014 7:38 pm

Our son had big anger issues for a month or two after Kawasaki's. He got angry for no reason, attacked his baby sister, and was constantly throwing screaming fits. For us it did get better. I think the vessels in the brain swell during the disease and affect personality, as well as this being a very painful experience, which can traumatize anyone, especially a small child . That is only what I think, I am not a doctor, it is only my theory. I think your son will be fine as long as all of the heart checks at follow ups come back within normal limits. As far as I can tell most kids never have this again, and go on to lead normal healthy lives. In the short term your child may be immune depressed for a while and catch all kinds of illness's, so you making sure of good hygiene is a really good idea. Again, I wish I had more answers for you, but this disease is seriously overlooked by the medical community in my opinion.

TheTallestTree
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Re: Why researchers are not able to find the cause for KD

Post by TheTallestTree » Tue Mar 10, 2015 10:14 pm

I grew up in a city with prominent researchers focusing their work on KD. One of the researches where I live believes KD is caused by certain spores from China. This is why there are many cases on the west coast (because of the winds).

Frank&Edy'sMom
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Re: Why researchers are not able to find the cause for KD

Post by Frank&Edy'sMom » Sat Mar 21, 2015 12:48 pm

I have read about the spores from China and the theory could be true, seems that a lot of the times there are outbreaks, the jet stream is over them. I think it had to do with farming or something. This is one more reason it should be a mandatory reported disease to the CDC if you ask me, tracking it could possibly help find a cause.

Esteban's Mom
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Re: Why researchers are not able to find the cause for KD

Post by Esteban's Mom » Sat Aug 01, 2015 6:07 am

I agree. The unknown is so frustrating. After my son KD diagnosis I tried to find answers that simply aren't there. I am so greatful for this forum that I am able to read many stories and get insight, find hope. I am that mommy always being super careful to wash hands to use hand sanitizer keeping my son germ- free as much as I can. I think that if there is not one yet there should definitely be one- a case study. This is very serious and devastating. Yes my son is back from the hospital, but I haven't been able to stop worrying. I cannot stop searching for clues trying to find answers, I have read countless sites on or about KD. I keep tracing my steps back to the days, hours, month prior to him getting sick. No one should have to endure this horrific disease, especially not a child. I have nothing negative to say about CNM in DC the hospital that treated my son in fact I am eternally thankful for the great care and prompt diagnosis. My suggestion would be that this hospital or any other with KD patients would do Q&A and input these valuable Info on a data base. I think that because of the rarity of this disease every case should be throughly analyze and study. We need answers if have answers we have the power to prevent it.

Zainabsdad
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Re: Why researchers are not able to find the cause for KD

Post by Zainabsdad » Sat Aug 29, 2015 1:52 pm

my daughter 9years old got fever and finally diagnosed with probable KD (later on confirmed). after getting IVIG therapy along with high dose aspirin she was discharged from hospital and developed some beading in Coronary vessles (LMS and proximal LAD). we are living in Pakistan and my daughter was one of the very few cases of Kawasaki disease presented at Shifa International Hospital, Islamabad. we are very much disturbed and worried about our daughter because doctors are saying that there is not much data available about this long term management of this disease and our practice is also very very much limited in treating such type of patients. this is really a matter of concern that researchers are still unable to find a cause and then proper prevention and management of long term consequences of this disease. how can we (parents from different locations) help the international authorities take steps regarding this issue so that our future generation could be saved from KD.

SophieBird52
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Re: Why researchers are not able to find the cause for KD

Post by SophieBird52 » Wed Nov 18, 2015 7:42 pm

I just discovered this site and thought I'd chime in. It is interesting that more still isn't know about the cause of KD yet. My son was diagnosed at age 4 with this, back in 1990. At the time we were in a small town in NH when his two sibs were treated for strep throat but he tested negative. A few days following this I gave birth to our 4th child and when I returned from the hospital he still wasn't up to snuff so we returned to the clinic and I am so thankful the physician had the good sense to send him immediately to Boston Children's Hospital suspecting Kawasaki. He was treated with high dose aspirin and gamma globulin (as I remember).

He had follow up echo cardiograms for a few months and was given a clean bill of health. He went on to run cross country in high school and has had no problems since then.
He was later diagnosed with ADHD as well and was on meds for that without any ill effects. I know others have voiced concerns in this regard.
He was always my busiest most active one of the bunch and for some reason got a kick out of trying to get near the vacuum cleaner exhaust as I cleaned! And was always hanging out on the floor. I always wonder whether there was a connection with this behavior or some possible mutation with strep throat of some sort. I guess the jury is still out on the cause of this 24 yrs on.

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