John Tavolta's son Jett dies at age 16

[Marthatex]

Hi Martha. The seizures themselves aren't so bad, my son has zero recollection of them, so what does he care? LOL. It's just the risks of injury,SUDEP, and status that scare the snot out of me.
While my sons epilepsy is pretty well controlled, you never know and that right there is the problem. I had really just recently gotten used to him driving. his last seizure was 2 years ago before this week. So we certainly got complacent and felt his meds were 100% effective. So now they are 99%. It's not all that comforting because it only takes one bad one.

What do people do that have seizures but need to drive? Is there a chance he could have his license taken away? These days that would be a "fate worse than death" for most kids.

On the other hand, you don't want him having a wreck because of a seizure.

 

[JBean]

It is a fact that they can't be 100% controlled.

What I disagree with is that 100% control is the mistaken belief of the posters here or the public as a whole...

I think the public is suspicious that this child did not receive the normal standard of care that a board-certified neurologist would provide because the parents are high ranking members of a group that denies neurological disorders exist or should be treated medically. Adding to the controversy is the insistence that Kawasaki's is involved (when experts say it doesn't do this) and the denial of the autism outright despite the testimony of numerous witnesses to the contrary.

I think some believe that it is just a matter of taking a med and someone is seizure free. My post said that is a mistaken belief of those not familiar with seizure disorders and I think you agree with me on that, so I still don't understand what you are disagreeing with.

How do you know that he did not receive the "normal" standard of care that was appropriate for his case? One would have to have the specific details of his case to determine that. IN one of my earlier posts, I stated that I don;t think any of us have enough information or expertise to determine if he was properly cared for or not.
I chose alternative treatment for my son with the full support of one of the top pediatric neurologists in this area. But two other pediatric neurologist told me I was nuts and would not support me at all. Fortunately we played it right and I am grateful that I followed my own mind and did it under supervision.
I understand what the suspicions are. i am only suggesting that none if us has any idea.

 

[JBean]

What do people do that have seizures but need to drive? Is there a chance he could have his license taken away? These days that would be a "fate worse than death" for most kids.

On the other hand, you don't want him having a wreck because of a seizure.

or kill someone else.
he has already lost it for 4 months in 2006. he has been on medical probation for the last 2 years. That imeans he had to have his license re evaluated every 6 months which included a questionnaire and a doctor report and eval. he just got off med probation in October. he may or may not lose his license this time. If his doctors report that it was because he was ill or they can pinpoint a reason, they may let it go and just put him back on med probation. Or he may lose it for4 to 6 months and go on med probation from there. Don't know yet. here in CA the ER doctors will report that he had the seizure to the DMV. He will get a notice any day now probably suspending his license and then he can schedule a hearing to show cause why he should not lose his license.
we shall see what happens.

 

[Marthatex]

In the interview with the EMT which I posted a couple of pages back

http://www.foxnews.com/story/0,2933,475766,00.html

It says

I would think this interview was a violaton of medical privacy.

It seems like there is so much conflicting and downright innacurate information being published. I checked a Physician's Desk Reference, and there is no mention of seizures being associated with Kawasaki disease, although coronary arterial problems can occur. Usually Kawasaki is suffered at a very young age.

One article mentioned they stopped the medicine because of damage, but there are other medications for seizures.

I don't think it matters now though; he was given constant care and a good life, despite profound disabilities. I'm sure there are parents all over the country are dealing with these situations and aren't blessed with the resources the Travoltas have.

The sorrow is the same though; RIP Jett Travolta

 

[JBean]

I would think this interview was a violaton of medical privacy.

It seems like there is so much conflicting and downright innacurate information being published. I checked a Physician's Desk Reference, and there is no mention of seizures being associated with Kawasaki disease, although coronary arterial problems can occur. Usually Kawasaki is suffered at a very young age.

One article mentioned they stopped the medicine because of damage, but there are other medications for seizures.

I don't think it matters now though; he was given constant care and a good life, despite profound disabilities. I'm sure there are parents all over the country are dealing with these situations and aren't blessed with the resources the Travoltas have.

The sorrow is the same though; RIP Jett Travolta

At the epilepy board, the parents that post there put the status of their children's meds in their signatures. i don;t know if I can post them or not. They give you an idea of what they have to go through to determine the right med.
I refused meds for my son as a child because the medications available 19 years ago did too much damage to his body. He is lucky in that many new drugs have come out in the last decade that are far superior to the older drugs and they work on him. but unfortunately, the new drugs don't work on everyone, so they still have to make the same choices that I did 19 years ago.
here are some signatures from the other forum just to give you an idea. I will check and make sure this is ok to post and if not I will take them down:

mom to 21 yr. old son w/ idiopathic PGE. Tried a multitude of meds. haven't gained acceptable seizure control YET...still hopeful. Current meds: Mysoline, Clonazepam, Phenobarbital, and Topamax.
------------------------------------------------------
Delaine, mom to wonderful 4 yr old girl.
Dx IGE 1/08. Typical absence seizures (simple/complex). Myoclonus at 18 mos.
Tried/failed Depakote. LGIT ao 7/08.
--------------------------------------------------------
Mom to 14 year-old son. Idiopathic intractable generalized seizure disorder. Absence and TC, some partials too. Bye bye Keppra, Zonegran and Depakote. Lamictal 350 mg.
-----------------------------------------------------------
Five year old son diagnosed with a prenatal stroke to the right temporal lobe in October 2007 after tc seizures. Seizures have been uncontrolled by medications.
Surgery at CHB October 2008.
On Topomax, Depakote and Tegretal...currently weaning Depakote.
Failed dilantin, keppra, lamictal, trileptal, klonopin and zonegran.
-------------------------------------------------------------
Single mom to Jackson (9 yo son with Primary Generalized Epilepsy. Currently taking Keppra, Melatonin, and Concerta.

 

[concernedperson]

I think some believe that it is just a matter of taking a med and someone is seizure free. My post said that is a mistaken belief of those not familiar with seizure disorders and I think you agree with me on that, so I still don't understand what you are disagreeing with.

How do you know that he did not receive the "normal" standard of care that was appropriate for his case? One would have to have the specific details of his case to determine that. IN one of my earlier posts, I stated that I don;t think any of us have enough information or expertise to determine if he was properly cared for or not.
I chose alternative treatment for my son with the full support of one of the top pediatric neurologists in this area. But two other pediatric neurologist told me I was nuts and would not support me at all. Fortunately we played it right and I am grateful that I followed my own mind and did it under supervision.
I understand what the suspicions are. i am only suggesting that none if us has any idea.

Bean, I deal with this kind of stuff on a daily basis. Sometimes doctors are stumped too. Paige's doctors confir daily now. There are 4 primary's on the team with secondary doctors as relief. Can they pull this off? Hopefully, yes but it isn't without a lot of work.

Because it is so tough do I lamblast them for not trying hard enough? Never, they try very hard. I didn't want her second surgery recently but she wanted to try. She is an adult and that was her decision. It didn't work and now she has many months of rehab. We can only do what we can and we can only do what is available to us and our decisions that are heeded or not.

I suggest that some of these posts have no clue what life is really about when there is severe illness and what is right and what is wrong.

 

[twinkiesmom]

I understand what the suspicions are. i am only suggesting that none if us has any idea.

I don't think we will ever know.....But if Jett was allowed to take anticonvulsants then why was Tory Christman apparently not allowed to do so?
http://en.wikipedia.org/wiki/Tory_Christman

I'd be thrilled if the Travoltas rejected the teachings on psychiatric/neurologic drugs....I hope we will hear of a public disavowal, but do not expect it to happen.

 

[MOMto5]

At the epilepy board, the parents that post there put the status of their children's meds in their signatures. i don;t know if I can post them or not. They give you an idea of what they have to go through to determine the right med.
I refused meds for my son as a child because the medications available 19 years ago did too much damage to his body. He is lucky in that many new drugs have come out in the last decade that are far superior to the older drugs and they work on him. but unfortunately, the new drugs don't work on everyone, so they still have to make the same choices that I did 19 years ago.
here are some signatures from the other forum just to give you an idea. I will check and make sure this is ok to post and if not I will take them down:

mom to 21 yr. old son w/ idiopathic PGE. Tried a multitude of meds. haven't gained acceptable seizure control YET...still hopeful. Current meds: Mysoline, Clonazepam, Phenobarbital, and Topamax.
------------------------------------------------------
Delaine, mom to wonderful 4 yr old girl.
Dx IGE 1/08. Typical absence seizures (simple/complex). Myoclonus at 18 mos.
Tried/failed Depakote. LGIT ao 7/08.
--------------------------------------------------------
Mom to 14 year-old son. Idiopathic intractable generalized seizure disorder. Absence and TC, some partials too. Bye bye Keppra, Zonegran and Depakote. Lamictal 350 mg.
-----------------------------------------------------------
Five year old son diagnosed with a prenatal stroke to the right temporal lobe in October 2007 after tc seizures. Seizures have been uncontrolled by medications.
Surgery at CHB October 2008.
On Topomax, Depakote and Tegretal...currently weaning Depakote.
Failed dilantin, keppra, lamictal, trileptal, klonopin and zonegran.

So true, JB. My daughter has been on Dilantin, Tegretol, Zonegran, Topamax, Keppra, a few others that were so short lived I don't even recall the name and various combinations of the above. All these drugs, with the exception of Keppra, are metabolized through the liver and can be very damaging. We constantly have to have her medication levels and liver function checked. It's a gut wrenching decision to make to give these to your child. I wanted to throw in the towel on these meds many times, but unfortunately for my daughter, that wasn't an option. Though her grand mal are somewhat kept in check, she still has up to 8-15 episodes of seizure activity every minute (mostly absence, petit mal) . The doctor described her situation as like a computer constantly rebooting or someone standing in a room turning the lights on and off. She has not recollection of her absent time or of the grand mal events. Her own neurologist said she would never be "seizure free", that but the best we could do was to control as much as was possible. The nightmare is in knowing it only takes one time. I believe that Jett's "one time" came and there was really no way his parents, or anyone else could have known the seizure was coming or prevented it. Such a horrible tragedy.

 

[JBean]

Bean, I deal with this kind of stuff on a daily basis. Sometimes doctors are stumped too. Paige's doctors confir daily now. There are 4 primary's on the team with secondary doctors as relief. Can they pull this off? Hopefully, yes but it isn't without a lot of work.

Because it is so tough do I lamblast them for not trying hard enough? Never, they try very hard. I didn't want her second surgery recently but she wanted to try. She is an adult and that was her decision. It didn't work and now she has many months of rehab. We can only do what we can and we can only do what is available to us and our decisions that are heeded or not.

I suggest that some of these posts have no clue what life is really about when there is severe illness and what is right and what is wrong.

I am not sure if it is harder to make decisions on our children's behalf or watch them make different decisions as adults than we would in similar circumstances. I know you and Paige have had more than your share and all we can do is remain hopeful and move forward with God's blessings.

 

[pooky169]

I have never had to deal with my son having any major health issues but I can see both sides of the story. It would be heart wrenching to have to make the decision to keep a child on organ damaging medications to control their illness. I think it is up to each individual parent to decide what is best for their children. There are no easy answers to this dilemma I just think that everyone does what they think is best for their families and not everyone will agree with everyone but that is the parents personal choices.

 

[JBean]

So true, JB. My daughter has been on Dilantin, Tegretol, Zonegran, Topamax, Keppra, a few others that were so short lived I don't even recall the name and various combinations of the above. All these drugs, with the exception of Keppra, are metabolized through the liver and can be very damaging. We constantly have to have her medication levels and liver function checked. It's a gut wrenching decision to make to give these to your child. I wanted to throw in the towel on these meds many times, but unfortunately for my daughter, that wasn't an option. Though her grand mal are somewhat kept in check, she still has up to 8-15 episodes of seizure activity every minute (mostly absence, petit mal) . The doctor described her situation as like a computer constantly rebooting or someone standing in a room turning the lights on and off. She has not recollection of her absent time or of the grand mal events. Her own neurologist said she would never be "seizure free", that but the best we could do was to control as much as was possible. The nightmare is in knowing it only takes one time. I believe that Jett's "one time" came and there was really no way his parents, or anyone else could have known the seizure was coming or prevented it. Such a horrible tragedy.

OH man I feel your pain. I really shouldn't have said my son was seizure free.he has suffered from absence and drop seizures during most of his life. Learning was almost impossible for him because he missed chunks of information in the typical classroom setting. the drop seizures were just a pain! But he had been grand mal free for many years. The meds are a tough deal. He is on 300mg of lamictal now.

The name of the game is just what you said, controlling them as much as possible.
This whole thing is tragic and as I have said, sometimes the frustration comes from doing everything we can, but it just not being enough. It is a helpless feeling that the Travoltas know in a way I hope we never have to.
:blowkiss:

 

[gitana1]

It is a fact that they can't be 100% controlled.

What I disagree with is that 100% control is the mistaken belief of the posters here or the public as a whole...

I think the public is suspicious that this child did not receive the normal standard of care that a board-certified neurologist would provide because the parents are high ranking members of a group that denies neurological disorders exist or should be treated medically. Adding to the controversy is the insistence that Kawasaki's is involved (when experts say it doesn't do this) and the denial of the autism outright despite the testimony of numerous witnesses to the contrary.

You know, it does seem obvious from the little I have seen of this child that he had autism. It appears the family denied this. But, they may have been treating it anyhow, even if they did not label it autism. The Travoltas mentioned detox therapy. Coincidentally (or maybe not so coincidentally), CAN and several autism activists promote detox therapy in the treatment of autism. We don't know everything these parents did for their child, and to treat his developmental issues. Further, there have been public statements that these people treated their son's seizures, with and without medication. There is no negligence on the part of the parents here for how they chose to treat their child's seizures, regardless of their religious beliefs (and I am NOT a fan of scientology at all and I agree that Kawasaki's disease neither causes seizures nor developmental problems!). It would be different if they were withholding medicine proven to work for religious reasons, causing great risk of serious injury or death and there is nothing to show that this is what happened here. It really bothers me that the public feels the need to question anything in this case. These people obviously deeply loved their son and they just lost him! I know grief. It is such a vulnerable time when one questions their own actions and whether they could have done more or different or better. I cannot imagine having such grief compounded by a nosy, clamoring public casting ugly innuendos and blame during such a horrible time. People should back off and feel some shame. My heart goes out to them in this awful period in their lives and to everyone else who has lost someone dear to them.

 

[JaneInOz]

So true, JB. My daughter has been on Dilantin, Tegretol, Zonegran, Topamax, Keppra, a few others that were so short lived I don't even recall the name and various combinations of the above. All these drugs, with the exception of Keppra, are metabolized through the liver and can be very damaging. We constantly have to have her medication levels and liver function checked. It's a gut wrenching decision to make to give these to your child. I wanted to throw in the towel on these meds many times, but unfortunately for my daughter, that wasn't an option. Though her grand mal are somewhat kept in check, she still has up to 8-15 episodes of seizure activity every minute (mostly absence, petit mal) . The doctor described her situation as like a computer constantly rebooting or someone standing in a room turning the lights on and off. She has not recollection of her absent time or of the grand mal events. Her own neurologist said she would never be "seizure free", that but the best we could do was to control as much as was possible. The nightmare is in knowing it only takes one time. I believe that Jett's "one time" came and there was really no way his parents, or anyone else could have known the seizure was coming or prevented it. Such a horrible tragedy.

Thats what I was on Dilantin.


Just to ask does your daughter have loss of memory of her childhood ? oh - it would depend how old she is now I guess..
Does anyone with a older child who had seizures as a child have a blank for a childhood apart from scatters of memory ??

 

[Florida]

I have sort of fast forwarded through this thread. Tonight I was really irritated with Greta's reporting on the issue. Never once did she mention Scientology or Autism. From the 10 pm broadcast to the 1 am broadcast I did some surfing. I had fogotten Greta is a Scientologist. I am concerned with the fact that seizures are prominent with autism. I believe we are constantly looking for funds to research autism which is on the rise. So, I believe the relative importance of letting the public know that seizures are a critical part of autism and the treatment is very important.

JBean - I send you my heartfelt thoughts - epilepsy is a disease that I guess is very rarely mentioned in research. Do they still use the drug Zarontin? It was experimental back in the 60's.

I resisted sending Greta an email, lol, and decided to voice my irritation here.

http://www.mirror.co.uk/news/top-st...son-could-he-have-been-saved-115875-21013277/

This was one of the articles I came across while surfing.

 

[Lavanda Dolce]

My heart aches for John, Kelly and Ella. Truly a parents worst fear.

 

[Lavanda Dolce]

They have said they did treat him with anticonvulsants. I have no idea if not recognizing autism has any bearing on not recognizing epilepsy.
We do not know enough about his condition to draw any conclusions,imo. I chose to not medicate my son for 15 years and if I had it to do again I would choose the exact same course of action.

As a Parent Coordinator for parents of children with seizure disorders, I'm happy to answer any questions that those of you may have. First, let me explain a few things.

1) Sometimes lay people tend to associate seizures with a specific condition other than a seizure disorder, itself. (epilepsy) It is in fact seperate. A condition of it's own. However, do note that in many many instances children with one condition tend to have multiple other problems such as seizures.

2) My son has Asperger's syndrome, a form of autism, along with obsessive compulsive disorders, 5 different seizure disorders, hypothyroidism, ADHD and short term memory. Note his short term memory is due to having numerous seizures, including status epileptus twice...and it built scar tissue on the front temperol lobe. It is my personal opinion, albeit, I do not know Jett and his parents are the best to know...but if he has suffered many grand mal's as my son has when he was younger...then scar tissue would be apparent and could be responsible for some of his speech concerns, memory and even his gait..which in essence would rule out autism.

3) People can and have died from having a seizure itself when the seizure is prolonged (such as status epileptus) in which they can actually go into respiratory or heart arrest. My son was in a seizure for over 18 minutes, which is why they will induce a brain coma. (overdose of valium) in order to put the brain to sleep to cease the seizures and enable the body to recover. If Jett had a prolonged seizure on the bathroom floor this very well could have been the cause of death. Also, many with tonic clonic seizures (grand mal) will vomit and/or have excessive foaming at the mouth and lying in an awkward position can also cause the patient to choke. (years ago they used to think they would swallow their tongue and hence put an object into the mouth. That is no longer done as it is dangerous to place anything in the patients mouth as they clamp down and there is no getting the object back and it can invariably cause more damage than the seizure itself.)

4) Some people have very sensitive liver functions. Seizure medications can damage the liver and therefore must have liver tests monitored. Some medications can give all sorts of adverse effects from personality episodes to physical ailments. In Jett's case, he was on antiseizure medication and it was determined to cause more harm to him than good. My son has been on multiple medications for 19 years. (Since 11 months old) Thus as you know, with 5 disorders (grand mal, petit mal, myclonic, complex partial and simple partial seizures) my greatest fear is that one day his liver will no longer tolerate and he would have to be removed. This would have devastating effects. He would be literally non functioning if it were not for his meds.
Just as I've known children in my group who have done remarkably well on the ketogenic diet, because seizure meds could not control their seizures but the diet did. It's an individual assessment.

5) to squash the Christian Scientology that medications are forbidden is simply untrue. (DO NOT CONFUSE CHRISTIAN SCIENTOLOGY WITH "CHRISTIAN SCIENCE" they are seperate entire beliefs.) Prescribed medications by doctors are allowed, as is insulin, etc. Rumors have run amuck to the point that I've read some seriously terrible things stated that this could have been avoided.
at the same time, there are not prescribed medications for autism. Yes, there are medications to help those with autism with specific accompanying symptoms, such as OCD, agitation, etc. but there is NO medication in itself to cure or take care of autism.
6) Jett was a 16 year old young man. He was entitled to his privacy in the bathroom. It's hard to raise a child with restrictions, albeit, we must for their own wellness, however, from what I've read and heard he had not only one caretaker...(nanny)...but two. He also had a baby monitor in his room. He was rarely if ever left alone. The fact this occured in the bathroom makes it very sad because it's about the only place that he more than probably had privacy.

My heart goes out to John, Kelly and Ella. Iti s truly a parents worst fear and my heart aches for them.

 

[twinkiesmom]

5) to squash the Christian Scientology that medications are forbidden is simply untrue. (DO NOT CONFUSE CHRISTIAN SCIENTOLOGY WITH "CHRISTIAN SCIENCE" they are seperate entire beliefs.) Prescribed medications by doctors are allowed, as is insulin, etc. Rumors have run amuck to the point that I've read some seriously terrible things stated that this could have been avoided.
at the same time, there are not prescribed medications for autism. Yes, there are medications to help those with autism with specific accompanying symptoms, such as OCD, agitation, etc. but there is NO medication in itself to cure or take care of autism.

Read the Toby Christman story I posted earlier (seizures detailed in link below). We are not confusing Scientology with Christian Science. The issue with Scientology is neurological/psychiatric illness being treated....

http://www.xenu.net/archive/personal_story/tory/affidavit.html

I would argue that Brooke Shields' postpartum depression was also a life threatening illness, and she was attacked by Tom Cruise for treating it with antidepressants. What if she had been a Scientologist when she gave birth?

 

[twinkiesmom]

I cannot imagine having such grief compounded by a nosy, clamoring public casting ugly innuendos and blame during such a horrible time. People should back off and feel some shame. My heart goes out to them in this awful period in their lives and to everyone else who has lost someone dear to them.

My heart goes out to them too...
I have had a child hospitalized this year, and I do know what it is like to fight for the best care and to not know which professional to believe.

I don't feel shame about questioning the belief system that denies necessary medication to hurting people...If anticonvulsants are now permitted in Scientology, that is great...next step is to fight them regarding psychiatric drugs...Many illnesses of the brain have a biochemical component and can be successfully managed with medication.

 

[Lavanda Dolce]

Thats what I was on Dilantin.


Just to ask does your daughter have loss of memory of her childhood ? oh - it would depend how old she is now I guess..
Does anyone with a older child who had seizures as a child have a blank for a childhood apart from scatters of memory ??

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

 

[Lavanda Dolce]

Read the Toby Christman story I posted earlier (seizures detailed in link below). We are not confusing Scientology with Christian Science. The issue with Scientology is neurological/psychiatric illness being treated....

http://www.xenu.net/archive/personal_story/tory/affidavit.html

I would argue that Brooke Shields' postpartum depression was also a life threatening illness, and she was attacked by Tom Cruise for treating it with antidepressants. What if she had been a Scientologist when she gave birth?

I understand what you are stating...however, you are combining neurological with psychiatric and those are totally different spectrums. I for one am catholic by faith, however, call me a bad catholic but I do not believe and never have believed in confession to a Priest. I can talk to God myself with my confessions. What I'm trying to say is that not all people of a specific faith adhere to specific strict guidelines. We should not judge. This case is about Jett Travolta and his parents DID provide him with numerous medical doctors both nationally and internationally. He was also on medications that did not work well for him. And yes...I agree 100% that anyone religious beliefs that do not support medications for either neurological or psychological administration to control a condition is damaging and at times, when it involves a child, should be criminal should that child cease to have a quality of life that a medication can replace what their normal body does not produce.