It sure sounds like Bartonella to me... but then I am not a doctor.
Posted by TO LIFE (Member # 12371) on :
He was DX with Kawasaju Disease as a child. Which cause Vascullar SX, that's why I thought Bart..
Posted by TO LIFE (Member # 12371) on :
Tincup,
You beat me to it. I would't want to race you. Posted by bettyg (Member # 6147) on :
my sympathies go out to John Trovalta's family/friends; so young, 16. RIP.
i knew john had girls; didn't know of his son.
i'm sure close friend, oprah, will have a show about the disease that took john's son!
Posted by djf2005 (Member # 11449) on :
kawasakis is just another name for a sub set of symptoms that they dont know the cause of.
could very well be some sort of infection, not neccecarily a tbi, but very well could be.
they all will listen implicitly to their dr/s, so an opportunity here to propel lyme awareness will most likely not happen.
my condolences to the travolta family, although if any other kid had died of unknown causes would we have even heard about it?
derek
Posted by Geneal (Member # 10375) on :
I thought he had a seizure disorder.
My prayers and thoughts to his family.
How tragic.
Hugs,
Geneal
Posted by Starfall1969 (Member # 17353) on :
I heard also that he was autistic, and that their church (Scientology, right?) in some way said it was the family's fault that Jett suffered from this because they didn't do enough for the church.
Just another way of shifting the blame on some of these little known diseases instead of helping those who suffer.
Sorry, I'll get off my soapbox.
My condolences also go out to the family.
Posted by feelfit (Member # 12770) on :
I have the presentation of Kawasakis disease at the age of 48, verified through MRA.
True Kawasakis disease is a disease that presents in early childhood.
In my case it is LYME DISEASE affecting my cerebral arteries.
Or Bartonella.
So you are not all goofs to think Lyme or TBI's in these instances.
Feelfit
Posted by BlueCheetah (Member # 18626) on :
You stated: " . . .and that their church (Scientology, right?) in some way said it was the family's fault that Jett suffered from this because they didn't do enough for the church. . . ."
I don't know where that was printed, but it it is so untrue. Too bad the editors at that publication let that false idea get out the door. It had nothing to do with their faith nor with how little or much one was involved in their religious community.
Do you have a link - the direct citation - of where you heard/saw that statement? The editors of that news outlet need to made aware of the errors in that statement.
Thanks.
==
Truly, this is very sad for the whole family. The boy's health problems may not have begun from a serious reaction to carpet cleaning chemicals (from a normal service call to their house) but that was one huge hit for him as a toddler.
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Posted by kam (Member # 3410) on :
They are waiting for the results of the autopsies(sp?) as per Larry King Show last night.
Wondering how we could get info to family to ask about looking for spirochetes in the brain.
Would it need to be someone like ...sorry can't recall the doctor's name mentioned in the UOS film....someone who knew what they were looking for
[ 03. January 2009, 10:09 PM: Message edited by: kam ]
Posted by Keebler (Member # 12673) on :
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While I know lyme can be masked in a myriad of symptoms, we need to be very careful here. Not everything is lyme or a tick-borne infection. Many things cause headaches and seizures.
My concern is that approaching the family in any manner at this time would be an invasion of privacy and I know that I'd be reeling were that to be someone in my family. I would feel assaulted if someone came to me saying it's this or that - when for nearly the son's entire life the parents had been on watch.
Considering the son's history of health problems, I am sure that the family took into account many ways to decipher it and support their son.
I am sure the parents have instructed the pathologist to take a wide-eye approach.
Sure, we have much more to learn and it might be good to see autopsies routinely test for various chronic stealth infections so as to prevent painful lives and early deaths for others. However, this may not be the time or place to try to start it.
Perhaps the LDA or ILADS already has information as to if some program of this nature has been discussed - and if the testing would even be possible - and reliable.
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Posted by emla999/Lyme (Member # 12606) on :
Kawasaki disease: is it caused by an infectious agent?
Lloyd AJ, Walker C, Wilkinso M.
Portsmouth Public Health Laboratory, St Mary's Hospital, UK.
Kawasaki disease (KD) is an acute systemic febrile illness of unknown aetiology, predominantly affecting children under five years of age. Initially described in 1967 by Tomisaku Kawasaki, it is now the most common cause of acquired heart disease in children in the developed world.
Although normally self-limiting, KD is associated with a range of complications, the most important of which is the development of life-threatening coronary artery abnormalities. Here, we examine the evidence supporting the concept that KD is caused by an infectious agent.
Various infectious agents--including bacterial, viral and Rickettsial organisms--have been implicated as potential causes, as have certain immunological agents such as bacterial toxin-mediated superantigens, allergens such as anionic detergents and house-dust mites, and some chemicals (including heavy metals).
Following extensive research, however, no links between any of these individual agents and the disease have been established irrefutably.
Despite this, most of the epidemiological and immunological evidence currently available indicates that the causative agent is most likely to be infectious in nature; and additional evidence highlights the likelihood that development of KD is multifactorial in nature, requiring certain genetic and immunological factors, and possibly a vector.
Excellent informative article Emla. I wonder if someone could forward this to cnn Larry King Live.....and or Dr. Oz...
.maybe someone will be awake enough to pick up on this.
I don't know how) I was deeply saddened as well when I heard of his sons death.
My prayers go out to John Travolta and his wife Kelly Preston.
Gael
Posted by 2roads (Member # 4409) on :
I have noticed several obits recently and local life stories of people just dying at a young age, some with seizure activity and mental disabilities, other not mentioned.
I am reminded by the documentary" Under our Skin" by Jemsek (?sp), "it's the next Tsunami".
I wish I had studied microbiology as an adolescent. A profession to help answer some questions for me, and maybe give answers to others. At the very least, to have the life-long ability to search for a cure from the insidious infectious behavior.
How insane that a religion would penalize a parent for church support. Can't even blame the parents for ignorance because we all expect we can rely on the medical community....those who should give us answers.
I prey, in death, they will
2roads
Posted by imanurse (Member # 7022) on :
Interestingly, my daughter was diagnosed with Kawasaki's when she was younger. This doctor was the same one that misdiagnosed my EM rash as an unusual spider bite.
After I was finally correctly diagnosed and few months into treatment by an LLMD, I began to wonder if my daughter truly had LD too, because of her symptoms.
We had her tested too, and guess what, we were both CDC WB positive. True Kawasaki is somewhat rare, but LD is very common!!! Intersting that physicians always look for strange diagnoses when LD is so clear! It will be interesting to see what his autopsy shows.
I am sorry for the loss of this young Travolta teen. How very sad.
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