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Old 01-08-2009, 06:40 AM
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I want to say CNN but Im not sure. The reason the story caught my attention was they were correcting him the next day. Ill ask my husband later and see if he recalls the exact show.


My new project:

Every November is epilepsy awareness month. I'm begging everyone to contact their schools now to see what they can do to "celebrate" a day that month. Epilepsy Foundation will help with information.

If we all start educating at the school level, we will educate a lot of people quickly and hopefully compassionately. I do NOT want some uninformed, well intentioned person, sticking a spoon in my kids mouth, or rolling them on their belly or back during a seizure. I think all us Moms, Dads, Caregivers : ) MUST push the schools to start getting others, uninflected, educated. Its for OUR children's benefit. It is also their right*

If we start now we will certainly be really and able to help in November. If anyone needs or wants help getting started, Let me know and we'll do it together. Just start by contacting your school and asking them if they are open to having an E awareness day? Or program? Or what they can suggest.

Please help educate others.

Old 01-08-2009, 08:19 AM
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The NBC lady doctors name is Dr. Nancy Snyderman.
Old 01-08-2009, 08:34 AM
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Originally Posted by TexasTravel View Post:
The NBC lady doctors name is Dr. Nancy Snyderman.
Thank you. Now, does anyone have a way to get her contact information, whether it be her email address or phone number. This woman is basically saying that my parents should be blamed because they never watched me in the shower, and should be held negligent. ARRRGGHH!! If this woman has access to these shows, and she is an expert, why doesn't she take the time and help end some of these myths.
Please, if someone could either post her information, or send it to me via PM, that would be great. I am so agitated by all of this right now.

Thank you.
Old 01-08-2009, 10:44 AM
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I'll try to find it this afternoon, but during the Christmas holidays there was over the public tv network a public awareness clip about Epilepsy.

It well done and targeted children. I am sure it comes from the epilepsy fundation in Canada it could be passed along south of the border to help you out.

I'll followup on it later on.
Old 01-08-2009, 11:08 AM
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I just posted a good clip with Nancy Snyderman.
I titled the thread: Raising Awareness

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Old 01-09-2009, 07:51 AM
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Originally Posted by RobinN View Post:
I just posted a good clip with Nancy Snyderman.
I titled the thread: Raising Awareness

I am sorry, but where is the clip?
Old 01-09-2009, 08:56 AM
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
Old 01-09-2009, 09:14 AM
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Great video.

Thank you for posting this.
Old 01-18-2009, 04:29 AM
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There's even an article on Medscape about Jett Travolta, stating it's unlikly his seizures were caused by Kawasaki syndrome but presuming a relation between autism and seizires.

I'll post a copy beacause you have to log in on Medscape to read the article.

Quote :
Childhood Kawasaki Disease Unlikely Cause of Seizures in Travolta's Teenage Son

from WebMD — a health information Web site for patients

Daniel J. DeNoon
January 5, 2009 — Jett Travolta's childhood brush with Kawasaki disease is highly unlikely to have caused the seizures that may have led to his death, a Kawasaki expert tells WebMD.

Jett Travolta, the 16-year-old son of actors John Travolta and Kelly Preston, died on Jan. 2. The teen, known to have suffered frequent seizures, struck his head against the bathtub in the hotel where his family was staying, according to media reports.
Kawasaki disease is a mysterious and frightening illness. Might Kawasaki disease have caused Jett Travolta's seizures?
WebMD asked Kawasaki disease expert Nathan Litman, MD, chief of infectious disease and director of pediatrics at New York's Montefiore Medical Center.
"I am unaware of any association of Kawasaki disease with seizures," Litman tells WebMD.
Kawasaki disease can leave a person with an abnormally narrow coronary artery, and this can lead to a future heart attack. Early reports suggest Jett Travolta did not suffer a heart attack; an autopsy is under way.

Kawasaki Disease: Mysterious Ailment on the Rise
Nobody knows what causes Kawasaki disease, but it can be deadly. It's not common in the U.S., although incidence is increasing in Japan.
First described in Japanese medical literature by pediatrician Tomisaku Kawasaki, MD, the disease is a disease of childhood. Litman says 80% of cases occur in children under 5. Cases are very rare in anyone over the age of 10.
John Travolta has said in interviews that his son had Kawasaki disease when he was about 2 years old. In an interview with CNN's Larry King in 2001, Travolta expressed the opinion that the illness was brought on by Jett's overexposure to cleaning products, particularly carpet cleaner.
Science has yet to discover the cause, although most researchers think it's an infectious agent, probably a virus.
That would account for why it strikes early in life, why most cases occur in the winter, and why there are Kawasaki outbreaks. But an infectious agent would likely spread in families, and Litman says it's rare to see more than one child in a family come down with Kawasaki disease.
The classic symptom of Kawasaki disease -- technically known as mucocutaneous lymph node syndrome -- is a high fever lasting for five days or longer. Other symptoms include:
  • Pinkeye (conjunctivitis) in both eyes, but without purulent discharge.
  • Redness of the lips, tongue, and lining of the mouth. Lips are often cracked or bleeding.
  • A swollen cervical lymph node larger than 1.5 millimeters in diameter.
  • A red rash on the body, which may be flat or bumpy and which may have different patterns.
  • Changes in the extremities: swollen hands and feet with redness of the palms and soles. In the second week of illness, there may be peeling of the skin starting around the fingernails and extending to the arms.
Kawasaki disease is diagnosed when a child has five days of high fever and any four of the five symptoms listed above.
There may be other troublesome features, Litman says: swelling of the gallbladder, diarrhea, and painful swelling of the joints. But the scariest thing about Kawasaki disease is its possible effects on the heart.

Kawasaki Disease and Heart Trouble
"The most troublesome feature of Kawasaki disease is involvement of the heart," Litman says. "What worries everyone is that in the convalescent phase, about 10 days into the illness, there may be inflammation of the coronary arteries, which can result in aneurysm formation. This can cause turbulence throughout the artery and cause [narrowing] of the artery, which could cause a heart attack."
If not treated, one in five children with Kawasaki disease would get coronary aneurysms. Fortunately, treatment cuts this risk to about one in 20.
Treatment involves a high dose of immune globulin and a high-dose aspirin until the fever goes down. Once the fever goes away, the child's aspirin dose is reduced and doctors perform an echocardiogram to check for heart abnormalities.
"This generally results in a return to a happy state," Litman says. "In kids who do develop aneurysms, some may resolve, but this may still be a forerunner of adult-type coronary artery disease. They may be left with residual stenosis [narrowing of a heart artery] that can cause a future heart attack."

So if Kawasaki disease didn't cause Jett Travolta's seizures, what did? Seizures are the result of an electrical storm in a part of the brain. Some people simply develop frequent seizures for no apparent reason. Sometimes the cause is a trauma, infection, or tumor.
Media reports have suggested that Jett Travolta may have suffered from autism. The Church of Scientology, of which his parents are members, does not believe that autism is a valid diagnosis, and the Travolta family has rejected the idea that Jett had autism.
However, among children diagnosed with autism, there is a high prevalence of seizure disorder.

Nathan Litman, MD, chief of infectious disease and director of pediatrics, Montefiore Medical Center, New York.
WebMD Medical Reference from Healthwise: "Kawasaki Disease Overview."
Levisohn, P.M. Epilepsia, 2007; vol 48: pp 33-55.

Associated Press.
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Old 01-21-2009, 02:03 PM
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I had wondered if he had Epilepsy when it said he had a history of seizures. But we may never know. I know alot of people think he had Autism, but that John and Kelly denied he did. I do wonder if they even tried to test him for Epilepsy.
Old 01-21-2009, 06:02 PM
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Of course he had Epilepsy... that is only a label for two or more unprovoked seizures.

Perhaps they did not know what caused the seizures... that would be more understandable.

Neurofeedback - Rebecca's Story

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Old 01-22-2009, 04:29 AM
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Jett Travolta passed away and was marked
as "Seizure Disorder".

Because he is a resident of Florida, and Florida
is "territorial" in regards to the death of such;
once it has been announced, the curtains are

I lock this as they have here in Florida out of
respect for the deceased.

Much condolences to the family.
Old 03-09-2016, 02:25 PM
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Angry John Travolta's son JET

It has been several years ago now that Travolta's son Jet died from hitting his head when he fell because he had a seizure while he was taking a shower.
The fact that nobody knew was that Jet had E! He had been diagnosed to have E, but his parents wouldn't allow him to use any anti-epileptic drugs to try and control his seizures.
This is because of their belief in Scientology, just like Tom Cruise. Scientologists believe that NO member of their church can take any type of med that may alter a person's brain in the slightest way. Their belief is that taking a med that will alter the brain is going to destroy that person's brain!
In other words, Jet's parents found out through diagnosis that he had E, but they refused to get him any type of treatment, using meds, for his E. This ignoring of his condition by his parents ended up costing Jet his life when he had that seizure in the shower.
Are a parents religious beliefs more important than their child's life?


Last edited by Dutch mom; 03-09-2016 at 04:46 PM. Reason: moved post to existing thread on same topic
Old 03-09-2016, 10:24 PM
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Originally Posted by paradise survivor View Post:
It is a tradegy that the Travolta family has suffered. Unfortunately, there will be those who are going to say it was lack of meds, or the wrong kind of meds or whatever...the truth is we have lost those who were on meds and those who chose not to medicate for their own reasons. The loss is still a loss and will leave a huge hole in the hearts of the family. Blame or guilt will not fill that hole. I give my heartfelt condolences to the Travolta family and all the other families that have lost their loved one to E, yet another reason to live,love and laugh each day.
Beautifully written post by paradise survivor.

Acshuman, I can understand your concern and frustration to a degree, but with that said, the same unfortunate thing could have happened to someone who is medicated so who knows...we don't know.

Let's try not to bash religion here, especially when their beliefs are different than our own.

As a mom I can't imagine how horrible it would be to lose a child.

Last edited by CathyAnn31; 03-09-2016 at 10:26 PM.
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