Sunday, January 04, 2009

OT: Clearing the air on Kawasaki Disease


My heart goes out to John Travolta and his family for the loss of their 16-year-old son, Jett. What a devastating nightmare to lose a child. Any parent who's faced a child's mortality can empathize, I'm sure.

The Travolta family blames Jett's childhood bout with Kawasaki disease. We won't know for sure what happened until the autopsy is complete. But I'd like to clear up a few misconceptions about KD, as it's called, in the meantime

Kawasaki disease is a full-body vasculitis, meaning that blood vessels all over the body become inflamed. That's why the whites of the eyes turn red, along with the the soles of the feet and palms of the hands and the tongue. The heart, of course, is vascular, and it, too, becomes inflamed and can suffer permanent damage. KD affects mainly babies and toddlers of Japanese descent, and is often not diagnosed quickly. Children can indeed wind up with scarred and damaged hearts.

My younger daughter, Lulu, had KD when she was 8 years old. Luckily, a pediatrician recognized and diagnosed it promptly. Lulu spent 5 days in the hospital on intravenous gamma globulin and months convalescing at home. Today, at 13, her heart is fine.

No one knows what causes KD--and believe me, people have speculated galore. The Travoltas have been convinced for years that Jett's KD was caused by carpet cleaners. That's one of the theories that's circulated about it. I don't buy it, partly because hey, we never clean our carpets. KD is statistically more common in the winter and early spring (Lulu came down with it in January); maybe there's a correlation because people clean their carpets more in winter. I wrote a piece on KD for the New York Times and talked to all the leading researchers on it. They don't buy the carpet cleaners theory, either. It's more likely to be related to Staphylococcus aureus (Staph A) or toxic shock syndrome.

There is absolutely no evidence that KD causes autism. Repeat: KD does not, to the best of our knowledge, cause autism.

Of course there's a lot we don't know. We don't know that Jett Travolta was autistic, and frankly, it's none of our business. But we do know that kids who have had KD do not typically wind up with seizure disorders or autism.

I'm thinking of the Travolta family in their grief and loss, and hoping that Jett's death doesn't add to the misconceptions around Kawasaki disease. Maybe this well-publicized incident will inspire some researchers to get on the stick. There's been very little research done on KD. How about it?

8 comments:

Adam Wilk said...

Ms. Brown,
I stumbled upon your blog via Back Across the Line, and I'm really thankful I did--this article you've just written, like so many others, has really taught me alot, and quickly, too. I'm glad I found this site, I'll be bookmarking it, and I plan on visiting frequently!
Sincerely,
Adam Wilk

Anonymous said...

My daughter had KD as well and it developed within weeks of having our carpets cleaned. She was still crawling at the time and we moved into a house that previously a smoker lived in. Not wanting her to be exposed to any nicotine residue in the carpets we had them all cleaned. Little did I know that I was just introducing a different poison into her system. For all of our other pre-move in cleaning we used non toxic ("green") cleaners. You can refute it all you want but there is some correlation. Perhaps some children are more sensitive to it than others but do not say it isn't so. We've lived through it.

My heart breaks for the Travoltas. I suppose that something other than KD took Jett. That is unless heart damage caused by KD ends up being the cause. Either way, we almost lost our daughter to KD and the agony that they feel now must be simply unbearable.

Erica said...

I would really like to see the evidence for the correlation. Just because something happens before something else happens, doesn't mean there is a direct correlation -- however much our broken hearts want there to be.

It sounds like Jett had several issues, including possible autism and seizure disorder. The fact that Scientology isn't very open about disclosing health problems won't make the answers any clearer.

While I am not saying that it couldn't have been triggered by toxins in the carpet cleaning, it is right now, hard to jump to that conclusion. Why do Japanese and Korean children have a higher incidence of developing KS? More research is needed for sure.

I say all this as a mom who had a severely ill baby who almost died, and believe me, I wanted to know WHY.

Claire Saurin said...

Dear Harriet

I am a 26 year old young woman, on my 9th Birthday i became ill with KD. I was diagonised very quickly and my parents reckon this is the reason i made a full recovery.

I have led a perfectly healthy life since, i have an 8 year old son and baby number 2 on the way. I haven't really looked into KD much and don't know an awful lot about it, but i'm just wondering now if you know is there any chance that it is any way hereditary???? In anything i've read up on there is no mention of it!

Your opinion on this would be very appreciated...

Claire

Harriet said...

Claire,

I'm really happy to hear from someone who had KD as a child and is completely recovered. My daughter who had it is nearly 5 years out, and she has some lingering (relatively minor) effects, including some weird skin stuff that has persisted. But her heart is healthy.

I haven't read anything that suggests a direct genetic component, though there is the puzzle about people of Asian descent getting it more often (we are not Asian, so clearly it's not always true). Maybe there's some kind of underlying susceptibility that is genetic that accounts for it. I think very little research has been done on KD.

You're no doubt worried about your children. The good news is that since you know about it you'll be on the lookout, and if one of them develops it they'll get prompt treatment.

Good question. Thanks for writing.

Anonymous said...

My son has had KD, twice. As far as I am aware, there is no specific connection with Asian or Japanese descent and susceptibility, simply a man called Kawasaki who happened to be Japanese, was the first to describe it. BTW, both times my son had a bout of tonsillitis which preceded the onset - could be co-incidental. We didn't even have carpets the first time he got it (although we did happen to be living in Asia, second time we were living in Europe). It may be more commonly diagnosed in Japan/Asia; certainly our GPs in the UK were totally unaware of KD at the time of the first diagnosis.

The Laundress said...

I just read the People magazine article on the Travolta-Prestons and Jett and I was impressed with them and their parenting.

Jett certainly appears some kind of developmental disability, after scrutinizing the pictures and the comments in the article. Kind of floppy muscle tone and hyper-intense on favorite topics.

Cool that his parents just tried to keep him normal, or as normal as celebrity offspring can be...

It was weird reading about it and I was wracking my brain, why had I heard of KD before, suddenly remembered it was YOU. Hey, Harriet -- the world is very small sometimes. Betcha rug cleaners and KD and autism and prion disorders all come together some day soon. And we will all be knocking our heads and saying "Oh, yeah. Should have seen it coming." Or maybe not?

Well, in spite of their mysterious Scientologist background, the Preston-Travoltas seem to be excellent representatives of successful parenting of a differently-abled kid. Hoping to hear more, from them and from you on this!

tl

Harriet said...

Hi TL,
Yes, clearly they loved their son. And that's what counts. My concern in writing this post was that lots of parents whose kids had KD when they were toddlers were going to start freaking out and worrying about seizures and sudden death. And those really are not typical at all. I doubt very much they were related to Jett's death, though we will never know. Poor kid.