John says Jett was autistic

[Snoopymom]

I totally agree 100%

I have epilepsy, and have had it since i was about 13 yrs old. I still have bouts with it. THey have turned into grandmaw seizures. The dr told me the other day...We have to find a medicine to control them...I could have brain damage if i continue to have the seizures. The dr's had to have warned them of the consequences of not taking meds.

I hope you find the right treatment right away. We've been so fortunate that the first med ds started, Trileptal, has continued to work for 2 years now.

Do you ever check the forums on the Epilepsy Foundation site? Someone here recommended the parents board to me way back. I am so grateful. They are so incredibly supportive and knowledgable, such a great bunch of people. The site is all about sharing information and speaking out to dispell the stigma. I'm caught off guard A LOT at how much the stigma still exists. Even some of my own family members are afraid to mention it or pretend its not real which is probably why this tragedy makes me so sad.

 

[CowboyCO]

That news article said, "During his testimony Wednesday morning, Travolta said Jett suffered from seizures every five to 10 days. The seizures would last 45 seconds to one minute, he said."

How sad. I wonder if the Travoltas are feeling immense guilt that their possible (lack of) treatment or their philosophical/religious beliefs may have contributed or caused Jett's death. I think most parents always wonder if they could have done something else or more. But, here was possibly a real situation where they could have done more with what treatments and procedures are available. What a sad, sad burden to bear.

How sad for this child that his NUTBALL parents denied him medication that would nearly alleviate the HELL of a seizure every week. I guess holding onto two soup cans and reciting childhood events over and over until the "pain meter" doesn't register is better than medication that can eliminate torturous seizures and save his life.

I would walk on hot coals to save my kids and these guys do nothing, watch their kid suffer and die.

 

[CowboyCO]

They honestly with all their hearts believed it would be detrimental to them in the eyes of God.

Belief in God is not a part of Scientology. You are welcome regardless of your beliefs in Gods or monsters as long as you have a checkbook.

 

[Aisling]

How sad for this child that his NUTBALL parents denied him medication that would nearly alleviate the HELL of a seizure every week. I guess holding onto two soup cans and reciting childhood events over and over until the "pain meter" doesn't register is better than medication that can eliminate torturous seizures and save his life.

I would walk on hot coals to save my kids and these guys do nothing, watch their kid suffer and die.

It's a torment members of some religious groups go through every day.

Scientologists believe in reincarnation. They believe that every person's body is inhabited by the souls of the alien Thetans. If you use medications, especially mind-altering ones, you lose your ability to become "clear" enough to make the Thetans powerless over you, so you remain under their influence. In that case, your own soul which shares your body with the Thetans hasn't learned enough to evolve to the next level of being, and so you'll be reincarnated worse off than you currently are, in order for your soul to learn to control the Thetans in a stronger way.

If John and Kelly really believed in the Scientology teachings, they must have thought they were protecting Jett's next incarnation from being in a predicament worse than Autism.

 

[Snoopymom]

I know what you're saying. The thing is, when people really REALLY believe that what their religion says is true, they feel that they'll be doing more harm than good for the child's soul. Reminds me of a religious group that doesn't believe in blood transfusions...before there were medical ways around that, some of these people would let their loved ones die before allowing a blood transfusion. They honestly with all their hearts believed it would be detrimental to them in the eyes of God.

That's why I try not to judge people who behave based on their spiritual beliefs, because to them, their soul, or their child's soul is in jeopardy if they don't follow the tenets.

I just know that if John is finally acknowledging that Jett was Autistic, he must be going through an intense spiritual turmoil right now in addition to the heartbreaking grief. Very very sad.

Thanks for the scientology info and the perspective.

I'm looking at it too personally, I know.

 

[EMom]

I could be mistaken, but I believe the Travoltas DID give Jett anti-seizure drugs for quite a while, but discontinued them due to side effects. They are not stupid people.....They knew he had autism. Acknowledging it publicly (because of their religion) was another matter. I have a sneaking suspicion that Jett may have gotten treatment for "Kawasaki Disease" that bore an amazingly resemblance to what some autistic children received. And don't forget, when he was born 17 years ago, what the medical field knew about treating autism was in the dark ages compared to what it is now. Even if they had publicly said he had it all those years ago, I don't know that his treatment would have been much different. Yes, he was severely delayed, but he looks happy enough in so many pictures, even the candid ones taken in public by paparazzi. In other words, I don't think he was neglected.

He may not have gotten the most cutting edge treatment in every respect, but he certainly had attentive treatment and was well taken care of. I do think the Travoltas' refusal to admit his autism may have had as much to do with refusing to make him the poster boy for autism as their religious beliefs. They didn't owe it to the world to make their son public property.

I think Scientology is some wacky stuff, but clearly the child was loved and well cared for. For someone to try and blackmail the family over the facts of their son's death is beyond despicable. I hope they get serious prison time. John Travolta was trying to decide, under severe stress, whether to have his son treated at a local Bahamian hospital, or fly to Miami (30 minutes or so away from his HOUSE since his own plane is parked at his home) to get the best care available in the US. Which offered the best chance of survival? God knows I'd have hated to be in his shoes. And to have it used against you? What kind of scum does that?

 

[1stluvispooh]

I could be mistaken, but I believe the Travoltas DID give Jett anti-seizure drugs for quite a while, but discontinued them due to side effects. They are not stupid people.....They knew he had autism. Acknowledging it publicly (because of their religion) was another matter. I have a sneaking suspicion that Jett may have gotten treatment for "Kawasaki Disease" that bore an amazingly resemblance to what some autistic children received. And don't forget, when he was born 17 years ago, what the medical field knew about treating autism was in the dark ages compared to what it is now. Even if they had publicly said he had it all those years ago, I don't know that his treatment would have been much different. Yes, he was severely delayed, but he looks happy enough in so many pictures, even the candid ones taken in public by paparazzi. In other words, I don't think he was neglected.

He may not have gotten the most cutting edge treatment in every respect, but he certainly had attentive treatment and was well taken care of. I do think the Travoltas' refusal to admit his autism may have had as much to do with refusing to make him the poster boy for autism as their religious beliefs. They didn't owe it to the world to make their son public property.

I think Scientology is some wacky stuff, but clearly the child was loved and well cared for. For someone to try and blackmail the family over the facts of their son's death is beyond despicable. I hope they get serious prison time. John Travolta was trying to decide, under severe stress, whether to have his son treated at a local Bahamian hospital, or fly to Miami (30 minutes or so away from his HOUSE since his own plane is parked at his home) to get the best care available in the US. Which offered the best chance of survival? God knows I'd have hated to be in his shoes. And to have it used against you? What kind of scum does that?

I could not agree with your post more!!! Particularly the bold parts. I have a friend who's son has epilepsy and when he was 16 he had to go off of his meds for a while because they weren't working so the fact that Jett was not on any anti seizure meds at the time of his death is not as scandalous as people are trying to make it out to be.

You are so right about medical treatment for autism being in the dark ages. My DD 9 is autistic and the amount of change that has happened since her diagonalizes is staggering!!!

I personally feel that mentioning his Kawasaki Disease was their way of addressing his delays without making him the poster child for autism and not coming into conflict with their "religion"

Their is a rumor going around that they are now questioning Scientology. It doesn't surprise me. A lot of people who loose children question their religion.

When all is said and done my heart just breaks for them. Loosing a child and loosing a child that needed you so much you can't help but ask what if.

 

[3jsmommy]

I think the Travoltas seem like wonderful parents who loved their son very much. They did treat his disease and they obviously did their research. I think that people should be more outraged by the fact that chemicals caused this toddler to get so sick. Scientology is against psych. drugs, not all meds & some of their info on psychiatry is very spot on.
It wasn't too long ago that parents were told their child needed a full frontal lobotmy and it was considered the responsible thing to do for your child. Thirty years from now we could consider psych. meds to be just as horrific when we see the long term effects of drugging our kids. Just a thought...

 

[Ember]

I think the Travoltas seem like wonderful parents who loved their son very much. They did treat his disease and they obviously did their research. I think that people should be more outraged by the fact that chemicals caused this toddler to get so sick. Scientology is against psych. drugs, not all meds & some of their info on psychiatry is very spot on.
It wasn't too long ago that parents were told their child needed a full frontal lobotmy and it was considered the responsible thing to do for your child. Thirty years from now we could consider psych. meds to be just as horrific when we see the long term effects of drugging our kids. Just a thought...

Autism is not caused by chemicals...

 

[babytrees]

I could be mistaken, but I believe the Travoltas DID give Jett anti-seizure drugs for quite a while, but discontinued them due to side effects. They are not stupid people.....They knew he had autism. Acknowledging it publicly (because of their religion) was another matter. I have a sneaking suspicion that Jett may have gotten treatment for "Kawasaki Disease" that bore an amazingly resemblance to what some autistic children received. And don't forget, when he was born 17 years ago, what the medical field knew about treating autism was in the dark ages compared to what it is now. Even if they had publicly said he had it all those years ago, I don't know that his treatment would have been much different. Yes, he was severely delayed, but he looks happy enough in so many pictures, even the candid ones taken in public by paparazzi. In other words, I don't think he was neglected.

He may not have gotten the most cutting edge treatment in every respect, but he certainly had attentive treatment and was well taken care of. I do think the Travoltas' refusal to admit his autism may have had as much to do with refusing to make him the poster boy for autism as their religious beliefs. They didn't owe it to the world to make their son public property.

I think Scientology is some wacky stuff, but clearly the child was loved and well cared for. For someone to try and blackmail the family over the facts of their son's death is beyond despicable. I hope they get serious prison time. John Travolta was trying to decide, under severe stress, whether to have his son treated at a local Bahamian hospital, or fly to Miami (30 minutes or so away from his HOUSE since his own plane is parked at his home) to get the best care available in the US. Which offered the best chance of survival? God knows I'd have hated to be in his shoes. And to have it used against you? What kind of scum does that?

I so agree with your post. At some point the press did say that Jett had been on anti-seizure meds but had been off of them for about 6 months before his death because of the side affects (IIRC) while they were looking at other ways of controlling the seizures.

Jett had the sweetest and most loving eyes...you can tell he was loved and loved in return.

 

[okeydokey]

I think the Travoltas seem like wonderful parents who loved their son very much. They did treat his disease and they obviously did their research. I think that people should be more outraged by the fact that chemicals caused this toddler to get so sick. Scientology is against psych. drugs, not all meds & some of their info on psychiatry is very spot on.
It wasn't too long ago that parents were told their child needed a full frontal lobotmy and it was considered the responsible thing to do for your child. Thirty years from now we could consider psych. meds to be just as horrific when we see the long term effects of drugging our kids. Just a thought...

I couldn't disagree with you more. You can't cure psychiatric disorders with vitamins or very expensive "audits".

 

[Mouse House Mama]

I think the Travoltas seem like wonderful parents who loved their son very much. They did treat his disease and they obviously did their research. I think that people should be more outraged by the fact that chemicals caused this toddler to get so sick. Scientology is against psych. drugs, not all meds & some of their info on psychiatry is very spot on.
It wasn't too long ago that parents were told their child needed a full frontal lobotmy and it was considered the responsible thing to do for your child. Thirty years from now we could consider psych. meds to be just as horrific when we see the long term effects of drugging our kids. Just a thought...

I agree. Science constantly changes.

Autism is not caused by chemicals...

They don't know what causes Autism so nobody has any idea if exposure to certain chemicals triggers it.


I think the Travoltas just wanted to keep their private life private. Maybe they didn't want to be the face of any illness but wanted simply to treat their child in privacy while they dealt with their own feelings. Maybe they just wanted to protect him. Lord knows the media and paparazzi love to rip celebrities and their kids apart and will say and do anything. It is disgusting.
My heart breaks for them.

 

[Imzadi]

I couldn't disagree with you more. You can't cure psychiatric disorders with vitamins or very expensive "audits".

I think the OP was talking about the tendency for some doctors to rush to medicate and over medicate instead of looking for other (less convenient) options/alternatives. The part about using vitamins or very expensive "audits" to cure things, I agree with you.

I agree. Science constantly changes.

Yes, if you read the book, Angels & Demons, not the movie, it really points out that Science is really in it's infancy. What we call "scientific fact" is only as good as our powers of observation & repeatable study, and those are based on our current level of technology, machinery and available means of detection. What is scientific or medical "fact" today becomes obsolete, inaccurate knowledge tomorrow as more advanced technology, machinery, research and the ability to detect at a new level invalidates the "fact." And that new "fact" is only as good as the current new machinery... wich may get debunked the day after tomorrow.

 

[Aisling]

Belief in God is not a part of Scientology. You are welcome regardless of your beliefs in Gods or monsters as long as you have a checkbook.

Yes, I know. I was talking about the religious group that believes blood transfusions are a sin, not the Scientologists.

 

[Aisling]

I know what you're saying. The thing is, when people really REALLY believe that what their religion says is true, they feel that they'll be doing more harm than good for the child's soul. Reminds me of a religious group that doesn't believe in blood transfusions...before there were medical ways around that, some of these people would let their loved ones die before allowing a blood transfusion. They honestly with all their hearts believed it would be detrimental to them in the eyes of God.

Just quoting myself for the Cowboy.

And I agree about the checkbook thing.

 

[Disney Doll]

I could be mistaken, but I believe the Travoltas DID give Jett anti-seizure drugs for quite a while, but discontinued them due to side effects. They are not stupid people.....They knew he had autism. Acknowledging it publicly (because of their religion) was another matter. I have a sneaking suspicion that Jett may have gotten treatment for "Kawasaki Disease" that bore an amazingly resemblance to what some autistic children received. And don't forget, when he was born 17 years ago, what the medical field knew about treating autism was in the dark ages compared to what it is now. Even if they had publicly said he had it all those years ago, I don't know that his treatment would have been much different. Yes, he was severely delayed, but he looks happy enough in so many pictures, even the candid ones taken in public by paparazzi. In other words, I don't think he was neglected.

He may not have gotten the most cutting edge treatment in every respect, but he certainly had attentive treatment and was well taken care of. I do think the Travoltas' refusal to admit his autism may have had as much to do with refusing to make him the poster boy for autism as their religious beliefs. They didn't owe it to the world to make their son public property.

I think Scientology is some wacky stuff, but clearly the child was loved and well cared for. For someone to try and blackmail the family over the facts of their son's death is beyond despicable. I hope they get serious prison time. John Travolta was trying to decide, under severe stress, whether to have his son treated at a local Bahamian hospital, or fly to Miami (30 minutes or so away from his HOUSE since his own plane is parked at his home) to get the best care available in the US. Which offered the best chance of survival? God knows I'd have hated to be in his shoes. And to have it used against you? What kind of scum does that?

Great post!

 

[Caradana]

Like others, I do honestly believe that the two of them loved that kid with everything they had, and did what they could to make the right decisions, and we publicly always heard a very different story than the reality they seemingly acknowledged behind the scenes. Autism is so hard, and it can literally verge on hell in some circumstances. DH and I talk about trying for kids sometime next spring, and I literally think about autism and sparing us this when I pray every night. Honestly, it comes to mind. My heart totally goes out to the Travoltas in this case.

 

[SueM in MN]

.............

I just know that if John is finally acknowledging that Jett was Autistic, he must be going through an intense spiritual turmoil right now in addition to the heartbreaking grief. Very very sad.

I agree. That is very sad.

I so agree with your post. At some point the press did say that Jett had been on anti-seizure meds but had been off of them for about 6 months before his death because of the side affects (IIRC) while they were looking at other ways of controlling the seizures.

Jett had the sweetest and most loving eyes...you can tell he was loved and loved in return.

Yes, I have heard it mentioned multiple times in the news that Jett had been on anti seizure medications, but had been off of them for about 6 months because of side effects.
Side effects can sometimes be very severe and even life threatening. My youngest DD has epilepsy and the first anti-seizure medication she was on caused liver failure. If we had not stopped that medication, she would have had complete liver failure and died or have needed a liver transplant. By taking her off that medication and putting her on one that was not so hard on the liver, her liver recovered.
Some of the other side effects include sedation, which can be so severe that the person can't function.

I have also heard that the medications Jett was on were not controlling his seizures; the choice then is hard. Do you add more medications with more potential side effects?
Seizures are not life threatening - it is the things that can happen when someone has a seizure that can be life threatening: potential for injury from falls, for suffocation if someone turns their head and buries it in a pillow, some people stop breathing during a seizure, etc. It does sound like the Travolta family had taken account of those things by having someone with Jett at all times. So, they did not neglect him.

Even with the best medical advice, it's not always possible to prevent all seizures in someone with epilepsy. We're dealing with that in our youngest DD right now. Her medication is not controlling her seizures and she is having between 2 and 5 seizures a month. We have not found a combination of medications that control her seizures without totally 'snowing' her so she can't function. That is no way to live.
Everything is a balance - some people are able to get a good balance of medication side effects and seizure control. Others may find that controlling the seizures makes the 'side effects' side of the balance so 'heavy' that it doesn't make sense to go there.
We are in that situation with DD. Since seizures themselves are not dangerous and we don't have to worry about her falling because she is in a wheelchair, we (along with her doctors) have made the choice to not increase her medication. She is not aware of the seizure during it and does not remember it after (except to know that she did have a seizure). So, the
"hell of seizures" that a previous poster mentioned is mostly suffered by the family as we see her go thru something we are powerless to prevent.

 

[CowboyCO]

I think the Travoltas seem like wonderful parents who loved their son very much. They did treat his disease and they obviously did their research. I think that people should be more outraged by the fact that chemicals caused this toddler to get so sick. Scientology is against psych. drugs, not all meds & some of their info on psychiatry is very spot on.
It wasn't too long ago that parents were told their child needed a full frontal lobotmy and it was considered the responsible thing to do for your child. Thirty years from now we could consider psych. meds to be just as horrific when we see the long term effects of drugging our kids. Just a thought...

I would be interested exactly what about psychiatry that you think Scientology is "spot on" about. The"myth of depression, post-partum depression? The myth of psychosis, and mental illness? The myth of Alzheimers. When really all we need to do is empty our bank accounts to free ourselves of the bad stuff. Please.

I have a brother that was into Scientology for years. He's always had social/personality issues, which his scientologist handlers told him he could "cure" or "clear", by going through expensive audits by holding onto to two soup cans connected to a meter. They also told him once he had cleared his bad experiences, that he would then be free to become fabulously wealthy. They fleeced him of everything he earned over about 3 years until he finally figured out that no amount of money and talking into soup cans would fix him. He finally got in with a good psychiatrist, who eventually referred him to a psychologist. At 40, he go this helicopter pilots license and has direction for the first time in his life.

 

[JerseyJanice]

The general public will never know what the Travolta family did or did not do to treat their son's conditions.

Anti-seizure medications are not without risks. My 24 year-old niece died from chemically-induced leukemia in 2004. We will never know whether her illness was brought on from chemotherapy she received to treat ALL (a different from of leukemia she acquired 10 years earlier) or from her anti-seizure medicine which she took to control grand mal seizures brought on by the radiation therapy she received for the ALL.

It is not at all unusual for grieving parents to question their faith, and I would be surprised if the Travoltas were not examining theirs. I have no idea what Ms. Preston's religious upbringing was, but I do know that Mr. Travolta was baptized a Roman Catholic in infancy at St. Cecelia's R.C. Church in Englewood, New Jersey. (I know this because I know a member of his family personally.) I wouldn't expect him to return to Catholicism, but I think it offers more hope and comfort to families who have lost loved ones than Scientology ever could.