John Tavolta's son Jett dies at age 16

[GreenEyedGirl]

One of my friends has a son that is Autistic and my Aunt teaches
Autistic children in school.
It's my understanding and from what I have seen myself is
that people who are Autistic have a hard time with eye to eye contact.

If you look at the pictures of Jett when he was younger he made eye contact
with his parents and also to the cameras.
It seems to me just from looking at videos and pictures of him when he
was little compared to when he was older...something seems to have changed.
I think it's like you said... he had seizures and that caused damage.
JMO

I totally agree. I believe that he actually had brain damage from the seizures. I don't believe he was autistic. He did seem to have a few autistic qualities, but that can be explained away with brain damage. Every picture I've seen of him, he is making full eye contact. This is just my opinion, of course. I just feel so bad for the family-my heart breaks for them.

 

[susan1215]

I believe he had Epelepsy which is why he was on the Depekote and why he was watched at all times, it had nothing to do with Kawasaki disease. They are saying the seizure caused the death but if he hit his head and I heard he was bleeding from his mouth and nose then that could have been the cause of death too.

 

[concernedperson]

This a total nightmare for the Travolta's. The only reason people are responding is because they are famous. Their grief is just as overwhelming as anyone who has lost a child. No one ever questions what meds are given to Jane Doe or if they think they are appropriate. Or dig into Jane Doe's parents belief's when a horrible tragedy occurs. Medical issues are quickly scooted aside as someone might actually have to deal with them.

THIS IS NOT A CRIME! This is a family tragedy where illness took place and no famous identity could stop it. No matter how much they wanted to...they couldn't and their hearts are broken beyond repair and will never mend 100%. Please let them grieve in peace without repercussion.

 

[GreenEyedGirl]

This a total nightmare for the Travolta's. The only reason people are responding is because they are famous. Their grief is just as overwhelming as anyone who has lost a child. No one ever questions what meds are given to Jane Doe or if they think they are appropriate. Or dig into Jane Doe's parents belief's when a horrible tragedy occurs. Medical issues are quickly scooted aside as someone might actually have to deal with them.

THIS IS NOT A CRIME! This is a family tragedy where illness took place and no famous identity could stop it. No matter how much they wanted to...they couldn't and their hearts are broken beyond repair and will never mend 100%. Please let them grieve in peace without repercussion.

:clap: Thank you!

 

[Lavanda Dolce]

One of my friends has a son that is Autistic and my Aunt teaches
Autistic children in school.
It's my understanding and from what I have seen myself is
that people who are Autistic have a hard time with eye to eye contact.

If you look at the pictures of Jett when he was younger he made eye contact
with his parents and also to the cameras.
It seems to me just from looking at videos and pictures of him when he
was little compared to when he was older...something seems to have changed.
I think it's like you said... he had seizures and that caused damage.
JMO

One of the autism spectrum disorders is Asperger's and yes, many avoid eye contact. However, I will be the first to tell you that my own son will make eye contact. Fact is, he is very social and outgoing. The problem is...he cannot maintain conversations that are ongoing...he has his "own" focus topics that he would discuss. At the same time, many children with all sorts of autism spectrum disorders can vary in their own symptoms. What makes it rather difficult for me (and my son)...is that he looks 100% "normal" so the general public have expectations. This is difficult because he doesn't conform to empathy and social settings. In other words, for him to belt out the National Anthem in the middle of a church service would not be unusual. He will also say, without forethought, the first thought that comes to his brain. Because he appears "normal" people will react. Thus, he needs "protected" from others. For example, you can imagine the look on the cashiers face at the grocery store when he exclaimed "wow, you have really huge breasts! does it hurt to sleep on your stomach or can you not?"........so it's situations such as these that I will invariably explain Some autistic children are completely non verbal, others can verbalize. There is a fascinating video on Youtube that I will find and post of a young woman who is severely autistic...yet can communicate in a phenomanol way via a special computer.

 

[scandi]

This a total nightmare for the Travolta's. The only reason people are responding is because they are famous. Their grief is just as overwhelming as anyone who has lost a child. No one ever questions what meds are given to Jane Doe or if they think they are appropriate. Or dig into Jane Doe's parents belief's when a horrible tragedy occurs. Medical issues are quickly scooted aside as someone might actually have to deal with them.

THIS IS NOT A CRIME! This is a family tragedy where illness took place and no famous identity could stop it. No matter how much they wanted to...they couldn't and their hearts are broken beyond repair and will never mend 100%. Please let them grieve in peace without repercussion.

Thanks for that post Concerned, What you have said is so true. The LOVE is there for each child even if the means isn't. XOX

 

[Lavanda Dolce]

And if they withheld proper medical treatment for Jett due to their belief in Scientology, any evidence is now destroyed. I think this smells.

Kawasaki syndrome is not a life threatening disease. http://www.mayoclinic.com/health/kawasaki-disease/DS00576

Epilepsy and autism are not either. But proper treatment with the proper medication are not on the Scientology agenda. I am sorry for the Travoltas but even sorrier for Jett, because I think his parents were irresponsible.

Kawasaki disease is totally seperate from Jett having grand mal seizures. Jett was on medication and it did not help. It caused him more harm, than good. Please educate yourself as Christian Scientology DO allow prescribed medications. Jett was in the utmost care of two nannies, a baby monitor and around parents nearly at all time. Please do not judge. This family is grieving. And yes...epilepsy can be life threatning. I am the parent coordinator for parents of children with seizure disorders and have been for over 18 years. I cannot tell you how many children and young adults have died from situations that they have been in due to a seizure...at the same time, I know of two who died during the seizure due to status epileptus. Fact is, my own son encountered status epileptus twice in which he was induced into a brain coma to stop his brain from seizing.

 

[Lavanda Dolce]

I heard last night that John could not even bear the thought of his flying the plane home without his son, so they made arrangements for someone else to fly them home. I'm sure they had many wonderful times in that plane together.

I think this tragedy is going to be life transforming for John and his family...in him taking a different path in life somehow. Not necessarily giving up acting but taking up a new path or cause in some way.

The Travolta family has been very involved in a number of organizations that involve love and better living. I believe you are correct and that they will follow through on more. If you go to their website, you will see a list of the organizations that they support and are active. One that impressed me was called http://www.criminon.org/.

 

[TopGunner]

Thanks for that post Concerned, What you have said is so true. The LOVE is there for each child even if the means isn't. XOX

I Scandi :blowkiss: I'm with you and CP on this one. It's kind of turning my stomach seeing the media talking about this. I wish the Travolta's could have complete privacy and respect during this time, but I suppose that's a tall order considering their fame. You can see in Jett's eyes how special he was. Just beyond devastating.

 

[Lavanda Dolce]

My heart goes out to John and Kelly on the loss of their son. No one should have to endure losing their child, and then to be beat up in the media is adding pain. That being said, I am surprised that they didn't try additional anti-seizure meds. There are several and it is typical or one to work better than another in a given patient. It's also typical of one used for a length of time to start losing it's effectiveness for that patient. I am in no way comparing my dog to a human in terms of loss, but my epileptic dog was on seizure meds for years and we had to up the dosage over time and up the frequency of the dosage. Eventually she died of multiple seizures ( 3 in one weekend). The vet had warned me that the storm of electrical impulses in the brain could eventually just burn out the synapses. At that point, anything could happen. Another interesting fact I learned in my online research was the more seizures an individual has, the lower the threshold of stimuli that is needed to trigger the next seizure. Thus it is very important to prevent any additional seizures to the extent that it is possible. Taking someone completely off any anti-seizure meds would almost guarantee more seizures, more frequently, increasing the patients odds for brain damage or death.

Just to clarify, many times folks can be removed from medication and remain seizure free. Especially when we talk about children. Usually if a child is seizure free for 3 years they may wean the child to see if there is any problems. The unfortunate part to that, is that it's possible they could remain seizure free for years and then have a sudden onset again. Especially during puberty. We lost a 15 year old beautiful young girl in our community from this exact scenario. She had seizures as an infant up to the age of 4. Remained seizure free and removed from meds around the age of 8. She stayed seizure free until she went swimming at 15 years old in her backyard pool while her dad was mowing the lawn. She had a seizure in the pool and drowned. The first in 7 years. Very sad.

 

[Lavanda Dolce]

I believe he had Epelepsy which is why he was on the Depekote and why he was watched at all times, it had nothing to do with Kawasaki disease. They are saying the seizure caused the death but if he hit his head and I heard he was bleeding from his mouth and nose then that could have been the cause of death too.

I have not heard of the blood in the mouth and nose. That would certainly indicate to me that his brain was very traumatized during the seizure. The autopsy report states no physical trauma to the head. So yes, he may have hit his head...but hitting his head was not the reported cause of death. However, if the brain was in a rapid tonic clonic state...then it is entirely possible that a blood injury occured; albeit, in the hundreds of tonic clonic grand mal seizures I've seen...I've never seen blood.

 

[Lavanda Dolce]

Here is the video that I spoke of:

http://www.youtube.com/watch?v=JnylM1hI2jc

Fascinating look at the "language of autism".The Language of Autism
Are people with autism trapped in their own world? Or are the rest of us just trapped in ours?
After seeing 27-year-old Amanda Baggs, featured in this month’s Wired magazine, you may rethink your views of the so-called “normal” world. Ms. Baggs, who lives in Burlington, Vt., is autistic and doesn’t speak. But she has become an Internet sensation as a result of an unusual video she created called “In My Language.'’
For the first three minutes of the video, she rocks, flaps her hands, waves a piece of paper, buries her face in a book and runs her fingers repeatedly across a computer keyboard, all while humming a haunting two-note tune.
Then, the words “A Translation” appear on the screen.
Although Ms. Baggs doesn’t speak, she types 120 words a minute. Using a synthesized voice generated by a software application, Ms. Baggs types out what is going on inside her head. The movement, the noise, the repetitive behaviors are all part of Ms. Baggs’ own “native” language, she says via her computerized voice. It’s a language that allows her to have a “constant conversation” with her surroundings.

 

[JBean]

Just to clarify, many times folks can be removed from medication and remain seizure free. Especially when we talk about children. Usually if a child is seizure free for 3 years they may wean the child to see if there is any problems. The unfortunate part to that, is that it's possible they could remain seizure free for years and then have a sudden onset again. Especially during puberty. We lost a 15 year old beautiful young girl in our community from this exact scenario. She had seizures as an infant up to the age of 4. Remained seizure free and removed from meds around the age of 8. She stayed seizure free until she went swimming at 15 years old in her backyard pool while her dad was mowing the lawn. She had a seizure in the pool and drowned. The first in 7 years. Very sad.

My son's epilepsy took a similar path. He was diagnosed at 18 months and had tonic-clonic and absence seizures until age 5. I chose not to medicate him with doctor approval and supervision. The drugs 19 years ago were not anything I could put him on comfortably. He had absence and drop seizures but no more tonic-clonic from age 5 to 18. At age 18 the tonic-clonic seizures returned with a vengeance. Lots of improved meds in the last 12 years or so, and we opted to try lamictal. He has remained seizure free for a little over 2 years until last week when he seized behind the wheel.My son is extremely combative and argumentative in his postictal phase, so in his recent seizure it took 4 cops, 4 firefighter and 2 paramedics to restrain him and remove him from the car accident scene. One of my fears is that an officer will shoot or taze him.
Anyway, like i said, just when you think all is well all hell breaks lose and we start all over.

 

[Lavanda Dolce]

My son's epilepsy took a similar path. He was diagnosed at 18 months and had tonic-clonic and absence seizures until age 5. I chose not to medicate him with doctor approval and supervision. The drugs 19 years ago were not anything I could put him on comfortably. He had absence and drop seizures but no more tonic-clonic from age 5 to 18. At age 18 the tonic-clonic seizures returned with a vengeance. Lots of improved meds in the last 12 years or so, and we opted to try lamictal. He has remained seizure free for a little over 2 years until last week when he seized behind the wheel.My son is extremely combative and argumentative in his postictal phase, so in his recent seizure it took 4 cops, 4 firefighter and 2 paramedics to restrain him and remove him from the car accident scene. One of my fears is that an officer will shoot or taze him.
Anyway, like i said, just when you think all is well all hell breaks lose and we start all over.

Thank God he was ok. I certainly feel for you. Yes, I do understand 100% the fears...not too mention he is at the age that makes it even more difficult when it comes to driving, or not being able to drive. Did they check his levels? Was this a breakthrough or did he miss a dosage?

 

[JaneInOz]

Jane,
Many times due to seizures scar tissue builds up on the brain and can affect memory, both long term and short term.

sorry I missed your response thanks for responding
Can they see the scar tissue ? damage years down the track by any type of tests ?

I have Very little memory of my wonderful Childhood, (and I know it was because I have photos!) but am unsure if its to do with that or being adopted or both. (please if anyone wants to query the memory loss adoption connection - please pm me and don't do it here)

I had seizures for 6-8 years approx and then they stopped. As i said I was on that medicine Dilantin. I have no idea about them or how much medicine I took etc..

I am fairly certain they were GrandMal ones. I also remember the petit word being used.

I just seen a ticker across Nancy Grace that the Travoltas are going to be interviewed by the police in an investigation into the Death. I feel really bad for them, I dont think they did anything that would harm their child and they did what they thought was best.

I think that would be standard procedure involving a childs Death ?

This a total nightmare for the Travolta's. The only reason people are responding is because they are famous. Their grief is just as overwhelming as anyone who has lost a child. No one ever questions what meds are given to Jane Doe or if they think they are appropriate. Or dig into Jane Doe's parents belief's when a horrible tragedy occurs. Medical issues are quickly scooted aside as someone might actually have to deal with them.

THIS IS NOT A CRIME! This is a family tragedy where illness took place and no famous identity could stop it. No matter how much they wanted to...they couldn't and their hearts are broken beyond repair and will never mend 100%. Please let them grieve in peace without repercussion.

Unfortunately when you are in the Medias Eye - everything comes under scrutiny.
Look At Princess Diana

There are many famous celebs and royals and so on that have had tragedies occur and they are in the public eye and continue to be during the tragedy also.

That is the one downside to Fame

 

[JBean]

Thank God he was ok. I certainly feel for you. Yes, I do understand 100% the fears...not too mention he is at the age that makes it even more difficult when it comes to driving, or not being able to drive. Did they check his levels? Was this a breakthrough or did he miss a dosage?

Thanks LD.
You cannot check levels with lamictal. He presented with severe ketoacidosis which would certainly cause stress to lower his seizure threshhold. he also was late on a dose. They diagnosed him as type 1 diabetic on the spot. but after a night in ICU on an insulin drip and another night of stabilization in the hospital, they think he may not be diabetic after all. They do not know why he would have become so acutely and severely ill. He did not feel bad at all..that he can recall .So figuring that out is now our next adventure.:woohoo:

 

[Salem]

Respectfully snipped ~

Here is the video that I spoke of:

http://www.youtube.com/watch?v=JnylM1hI2jc

Powerful video Lavanda! I was stunned and amazed.

JBean - I feel your pain with your son. My cousin also has epilipsy. It didn't hit until he was 15ish and then it hit hard. He had rapid succession grand mals that kept him in the hospital for several weeks. He is on medication but he recently had a grand mal just a couple of days ago, Sunday I think. Very scary stuff. The medication also has side effects. So many people think you can just throw a pill at something.... in my cousin's case the medication does not seem to work very well and often it comes with some horrible side effects.

I truely believe that epilipsy is a life threatening disease. Even if it is not often the primary cause of death, if someone in not around to help during a siezure - so many things can go wrong. And for young people - it is hard to be in the company of someone all the time.

I don't know if Jett was medicated, but to me it doesn't really matter. I know a person can have grand mal siezures even if medicated.

I send the Travoltas my deepest sympathy for the loss of their young son. From all the pictures shown in the media, it is easy to see this young man was truely loved and I am sure the Travoltas did their very best to provide Jett with all that they could.

Salem

 

[JBean]

Respectfully snipped ~

Powerful video Lavanda! I was stunned and amazed.

JBean - I feel your pain with your son. My cousin also has epilipsy. It didn't hit until he was 15ish and then it hit hard. He had rapid succession grand mals that kept him in the hospital for several weeks. He is on medication but he recently had a grand mal just a couple of days ago, Sunday I think. Very scary stuff. The medication also has side effects. So many people think you can just throw a pill at something.... in my cousin's case the medication does not seem to work very well and often it comes with some horrible side effects.

I truely believe that epilipsy is a life threatening disease. Even if it is not often the primary cause of death, if someone in not around to help during a siezure - so many things can go wrong. And for young people - it is hard to be in the company of someone all the time.

I don't know if Jett was medicated, but to me it doesn't really matter. I know a person can have grand mal siezures even if medicated.

I send the Travoltas my deepest sympathy for the loss of their young son. From all the pictures shown in the media, it is easy to see this young man was truely loved and I am sure the Travoltas did their very best to provide Jett with all that they could.

Salem

OH my gosh that poor kid. I am so sorry. Ugh.
Funny thing, when my son pulled out of the gas station last Thursday, he happened to pull out in front of someone he knew. they watched him swerve wildly and stayed with him until he crashed into one of those temporary barriers for road construction. He saw him having the seizure through the window and called 911 befoer he even stopped. he pulled over and try to keep my son from hurting himself while he seized. My son chews on his tongue during and it is so gross! LOL. this poor kid that stopped to help is completely traumatized now. Anyway, he stayed with him til the cavalry arrived and then look out. My son is impossible to manage in the after phase, he is very hostile. I wish he was one of those that fall asleep after, but no such luck.
I agree with you about Jett and whether or not he was medicated is almost irrelevant at this point because we just don't know the details.

 

[Florida]

JBean, I got chills when I read your last post about the friend following your son after he pulled out of the gas station and calling 911. I am not a big believer in "it is your time" but someone was watching out for your son that night, that's for sure.

I watched Dr. Baden on Greta tonight who gave a rather simplified explanation of what happens with a Grand Mal seizure vs a cardiac event. He said the EMT's have a good chance of bringing someone back from a cardiac event and restoring the oxygen flow. During a seizure the brain is lacking in oxygen (not the heart) and there is little that can be done to restore the oxygen flow. He also said that detecting a weak pulse can often be attributed to the person feeling their own pulse in their fingers rather than the patient having a weak pulse. This made sense to me.

I dealt with this issue back in 1966 - petit mal seizures. My child had to wear a hockey helmet from two years of age to protect the head. They came on suddenly on Valentines Day, age two, and we stopped the medicine at age 6. However, after reading this thread tonight I do believe the learning disabilities that followed later in life could very well be directly related to the previous seizure disorder. Some words do not imprint on the brain so a sentence like the grass is NOT blue could be seen as the grass is blue with the word NOT left out. All the new terms you people are using are foreign to me. Back in the 60's a seizure disorder was in the closet. The Epilepsy Society helped you with dealing with keeping it from public knowledge because of the discrimination.

If nothing else comes from Jett's untimely death - perhaps it will be the advances in treating seizures coming to light. I have to admit I am rather discouraged that with all the advances, it still cannot be controlled better. I know I was warned that it could reoccur at puberty and again at mid life changes.

JBean your description of how the police might handle the situation was very discouraging. It seems after all these years public information is still an ongoing problem.

I just went to Mayo Clinic to see if Zarontin was still used. In 1966 it was an experimental drug that I had to drive from Connecticut to Children's Hospital in Boston to get. This is one of the side effects listed: In addition, some children may not do as well in school after using high doses of this medicine for a long time.

I remember there were three medicines - Zarontin, Phenobarbital and one other - that name escapes me - one of them was a green liquid. It will come back to me at some weird time but it bugs the hell out of me I cannot remember what it was. I am remembering something with a c?

I think the third medicine was Mebaral.

My heart goes out to all of you dealing with this issue. Reading this thread has opened my eyes to side effects later in life that could very well be attributed to a previous seizure problem. Thank you for that.

 

[Lavanda Dolce]

sorry I missed your response thanks for responding
Can they see the scar tissue ? damage years down the track by any type of tests ?

Yes. A cat scan or MRI of the brain will show the scar tissue damage....and this is not in all people who have seizure disorders. It is usually from those who have uncontrolled or multiple types of seizure disorders. Usually the scar tissue is in the temperol lobe and yes...temporal lobe seizures usually begin in the deeper portions of the brain's temporal lobe....this area is part of the limbic system, which controls emotions and memory.

Also, keep in mind many people do not store memory's of their childhood in the early years unless some sort of traumatic event occured. It varies from person to person. I can actually remember what my brain was thinking when I was 18 months old and in my playpen at my grandmothers house. I have exceptional memory for details from my days as a toddler...etc. However, my short term memory is not very good.

Many men, fact is...most men... could not tell you anything about their toddler and younger years...whereas women are a little stronger in that aspect.

I believe ,and this is my own observation from people I've talked with, that those who have happier trouble-free childhoods tend to not remember their toddler - early childhood as well as those who were troubled. Those who were troubled (parents divorced, illness, abusive parents, verbal abuse, alcoholic or drugged parents, or mentally ill parents, etc.) by their upbringing tend to have a better recall of details from their childhood. Sad, eh? You would think it would be the other way around. The "normal" person probably begins remembering their youth from around the age of 6-8 years old....and this is partly due to the relationships they began to build outside the home and the "adventures" in their lives.