Jett Travolta

[Cint]

First, how many of us, who have or have had seizures, have someone watch us when we are taking a shower or bath? I am sure there are some but I am sure that most of us do not.

Now, here is the point, the Today Show, this morning, was implying that since the boy was not being watched, while he was bathing, that there may be a criminal act of negligence.

People have to realize that Hollywood, and the media, have a big influence, on the law, through pressure of public opinion, etc.

What if this insinuation takes hold? What if, someday, you, or your family member, friend, etc., have a seizure while bathing while you or someone else is there? Do you expect the other person who is there to be arrested on criminal charges? Think about it. What if someday you have a seizure while your wife/husband/mother/father, etc., etc. are somewhere else in the house and you get injured. You may not have to die but maybe get injured in some sort of way. Say you end up in the hospital just to find that the other person in the house, who you love very much, has been arrested and is in jail on criminal charges. Is it right? Honestly, with myself being the one who has had epilepsy all my life, would be raising caine like you would not believe and would be filing charges against whoever put my wife in jail....to the extremes!

I do admit that there people who do need to be carefully watched because of their condition but I would hazard a guess that most of us do not.

Give it some thought. I already see the ball rolling. The hints are getting stronger everyday, by the media. Time will tell. If I am wrong, glory hallelujah. If I am correct, look out because any of you could be in their sights....eventually.

Sometimes the truth hurts.

Years ago, I did end up in the hospital with 2nd & 3rd degree burns on 25% of my body from suffering my 1st tonic/clonic seizure in the shower. Word of caution: Bathtubs/showers are dangerous places for those with seizure disorders!! Either way, one can fall and hit the water or their head! Looking back, I should have gone after the dumb ass doctor who made the diagnosis of hypoglycemia instead of epilepsy.

For the Travolta's, it would be absolutely ludicrous to go after the caretaker for negligence just because the seizure happened in the bathroom. It could have happened while he was sleeping or anyplace, for that matter. The media is so full of crap!

Cindy

[RobinN]

Nader -
I started out here with a very flip response, and chose to delete it since this thread will be viewed by many searching for answers to this question.

My daughter is not on meds. I have proof that she has improved dramatically from alternative therapies. Her health is first and foremost in my life at the moment.
You can not make judgemental comments like that, not knowing the specific circumstances. I can assure you the EMTs are called much less these days. She is clear headed and is enjoying the life of a teenager. We have chosen to take an alternative route, and it appears to be working.

About 30% of people with seizure disorders are not helped by medication. To say that they can be prevented with medication in all cases, is just false. Medication caused seizures in my daughters case.

Please be careful what you ask the courts to monitor. It might be your behaviors that are in question at some point.

[skillefer]

Sorry Nader, I have to agree with Bernard. Just because someone is on meds, doesn't mean they won't have seizures. I've been on meds for over 20 years, and the last 5 have been spent dealing with seizures, being put on higher dosages, and then changing meds. I'm actually one of the lucky ones. My original meds worked for me for a looong time. But eventually my body just got used to them. That's why I've had to switch meds. And that is what many of us who take meds to control our seizures face. The possibility that one day the meds we're taking now might not work.

Also, parents have the right to deny medical treatments for their children. There is another religious group that has teachings that forbid blood transfusions. Does the state prosecute the parents of the children that might need those transfusions? No. Instead, the medical industry has tried to find a way to help those patients who cannot have blood transfusions. Now we have cord blood banking and plasma transfusions. Perhaps with the nations eye turned towards seizures...if only briefly...the medical industry will begin to consider alternative treatments and investigate them seriously.

Now, whereas I use meds to treat my own seizures, I understand that there are some adults and some children who choose not to. And that's important to remember. We DO have a choice. Since we can choose NOT to use meds, I think it's important that the medical industry, and scientists, finally take a serious non-baised look at what alternatives are out there. I don't want people to think "oh, just take this pill and the seizures go away". Because that's not always the case. For some people, the pills actually increase seizure activity...or make the quality of life so miserable that prefer to go without the meds. For those of us who take meds, we choose them because they have helped to either reduce the number or completely control the seizures. But for those of us who do take meds, we always have to stop and consider how the meds will effect us long term. Will this or that med screw up my liver? Will I be able to safely have children? How will it effect my memory and coordination? How much weight will I gain? Will I end up seriously depressed? Will I end up with Stevens Johnson syndrome? Could this med kill me? When you stop to think about it...for a parent whose child has just been diagnosed, the list of POSSIBLE side effects is daunting and scary. Do they put their child on a med that might cause permanent liver damage by the time the child's 30? What if one med doesn't do it? What if the child ends up on soo many meds that they rattle when you pick them up? Yes, some children are on multiple meds....5, 6, 7 different pills taken multiple times a day...how terrifying and frustrating for the parents.

My parents chose the med route because that was the only option that they thought that they had. I've stayed on the med route because my dosages have always been very low and they worked so well for me for so long. Now though, if I had a child with seizures, I'd seriously look into the different alternatives. I know what the possible side effects are...and ever since I turned 18, I've determined them to be acceptible risks. My thing is, I don't think that parents should have only one choice. They shouldn't have to take the med route because it's the ONLY thing the medical field endorses. And people over the age of 18 who are diagnosed should have other choices available.

[paradise survivor]

Yikes! This is a disturbing developement...I fight with neuros that have never taken the meds they prescribe but push like it was the end all, be all, while looking incredulously at me when I complain of the intolerable side effects, and now there is the thought that lawmakers want to join in to 'help'? God help us all!! I prefer to make my own choices and live my life on my own terms, thank you very much.

[Bernard]

Awesome post Skilly.

... My thing is, I don't think that parents should have only one choice. They shouldn't have to take the med route because it's the ONLY thing the medical field endorses. And people over the age of 18 who are diagnosed should have other choices available.

Take action!

[speber]

I would say it slightly different to make something more clear...
she said:

For some people, the pills actually increase seizure activity...or make the quality of life so miserable that prefer to go without the meds.

I would say since anti-epileptic drug's can affect different people so differently, blanket statements about the general populus are not wise. A person can:

• see no benefit from a drug...but tolerate it.
• see negative benefit regarding seizure activity(whether it is increased frequency or increased severity) but otherwise tolerate it (suffer negligible non-epilepsy side-effects).
• see some benefit regarding seizure activity(whether it is reduced frequency or lessened severity) but suffer other side-effects of varying degrees....causing a very tough decision as to stay with the drug or not.
• see some benefit regarding seizure activity(whether it is reduced frequency or lessened severity) and suffer negligible side-effects.

We hope for the last item, but it is a crap-shoot for many....and can be impossible for others due to tolerances they've built up, etc...

Alternative choices are ALWAYS a good option to have and should be thoroughly researched/backed/pursued/respected.


Speber

[RobinN]

Speber,

We hope for the last item

see some benefit regarding seizure activity(whether it is reduced frequency or lessened severity) and suffer negligible side-effects.

I am unclear as to how the last option is the best?

Perhaps taking anti-epileptic drugs are not in the best interest of some people with seizure activity..... EVER

We are not given options, nor tested to find the CAUSE.
It is 'two seizures" and you are put on the Merry Go Round.

[smutta]

I am appalled at some of the feedback LIKE we really have the answers for what to do when it comes to seizures!!! When you are a parent of a child with special needs ,we as parents only do what is best for the child and we only can do what we know.Through 21 years of research and forums and conferences I have attended there are not very many sure answers regarding epilepsy.You can educate yourself with what the specialists can teach you but again there are no sure answers.We are all on the same path of education and I pray that someday before my child s time is up we will find a cure !!!

[paradise survivor]

Skillifer is dead on! I did the med thing--for me the side effects were intolerable!! Not a little bit uncomfortable, life altering and even life threatening. The meds were worse than the seizures, at least with a seizure my memory returns after a while-Topamax ereased my brain for two years. And for the record- I have done Tegretol, Dilantin, Depakote, Lamictal, Neuronton, Zonegran,Topamax, and phenabarbitol, and those are the ones I remember, I did my walk thru hell, thank you very much!! I prefer to take my seizures as they come and live my life between events- not curled up in a ball in my bed, unable to think or function. I am happy for those who get relief with medication, but to summise that those of us that choose not to medicate do so because of minor side effects, is well, bull-patties!

[tinasmom]

First thing I would like to say is that we all have free will to choose our medical care. It actually took the death of my daughter for me to educate myself on the effects of the meds and seizures. Since my granddaughter has been diagnosed with E, and watching the quality of my daughter's life go downhill, I look for alternative ways to control her seizures. My daughter took 26 pills a day and still had intractable seizures. I do discuss my findings with our neurologist to see if this could help Nicole. I do believe that there are many toxins we are putting into our environment that are contributing factors in many diseases.
The loss of a child is a very tragic event no matter how they died. Since Jett Travolta's death is being contributed to a seizure, I feel that the E community needs to be there for them as they go through this loss, no matter what their medication choice was.

[TexasTravel]

I do believe that there are many toxins we are putting into our environment that are contributing factors in many diseases.

This is very true also. I live about 60 miles South of Houston, in chemical alley. I am surrounded by Dow, BASF, Amoco, Philips plants and many, many more. The fish that my family catches in the bays, the air we breathe, the water in the Brazos and San Bernard rivers, the ground water we drink etc., etc. have all been proven to have high levels of chemicals in them.

There was a report on TV a month or so ago that said that all of the bottled water, even the fancy ones, have, at least, meaningful levels of bad things in them (I would list them but I forget what they were exactly). None were absolute H2O.

[speber]

First of all, I NEVER said 'people who choose alternatives do so because of MINOR side-effects'!!!! If that is how it came across, please re-read. I stated there can be VARYING DEGREES of side-effects.

And for the record I never spoke for anyone but myself until the last comment where I wrote 'We hope for the last...'. There, I was speaking strictly for those of us who are taking meds....and I (again) NEVER said why we were taking meds!

Remember some have found no other avenues.....yet. It doesn't mean they aren't looking. I myself have had EXTREMELY good fortune with music 'therapy' of sorts...but have not been able to shake the demons that are my anti-epileptic drug's. Luckily, the side-effects FOR ME have been the lesser of two evils and allowed me to function in society.

I am EXTREMELY pro-alternative-therapy's-swayed......I wouldn't be here if I wasn't!



Peace,
Speber

[paradise survivor]

OK Speber- I admit you hit a nerve...a big one. I may have over stated my case, I am sorry if I mis read, this is a touchy subject for many, myself included.

[dfwtexas]

This topic is so frustrating to me, I cannot believe how the press is crucifying the Travolta family. In the moment of the worst of the worst (losing a child), the press seemed intent on linking this to Scienctolgy and pointing fingers at the parents. I thought we had confidentiality when it comes to our medical issues in this country, but the press feels we have the need to know what was going on with Jett's health. None of your business! These parents were loving, caring people that provided for Jett and any health issues he had. The parents had the right to determine what they felt was the best for their son and no one has a right to take that away from them.....or us.
I do take Keppra for my seizures...but if it was one of my children with seizures, I do not know I would take the med avenue.
The total lack of education when it comes to seizures sure have taken the cake in the mess the press has created. I was watching a new show last night that had "specialist"....he knew less about seizures than I did before I was diagnosed. This "specialist" said the only way to treat is with meds.
My heart is really breaking for the family.

[RobinN]

I think we have to look at this in a different way. I too am frustrated, however that does nothing for me, except turn people off to listening to me.

When I was teaching, if I lowered my voice, the children got quiet and were intent on what I had to say. Perhaps now is the time to hold hands with each other, and gain support to go out and TEACH.

It was not correct information that the medical examiner let the world hear. Someone listened, and the information was changed immediately.

If we share our stories, one by one, people will listen.

Carefully move it away from "scientology" and back to the rights of all parents and patients. Email your TV stations, write to your newspapers. Use words that you would want to hear in the news, because that is the only way we will have a voice. Don't let the uneducated have the last word. If you need help editing, ask someone here.

Speak up and be a voice for Epilepsy.... all over the world.

[epileric]

[paradise survivor]

Hey Robin, I just let someone know. I just fired off an email to Bill O'Reilly after hearing his guests regarding E. Holy smokes!! The man actually recommended a spoon in the mouth and neither doctor refuted!! Maybe we should all write an email or two to the 'news people' and maybe we can educate one or two.

[RobinN]

That is awesome! Good move!

He will be on next hour for us. I have got to watch this.
Problem with his show, you have to be one of his premium members to email his show, I think. Hope they still read all the mail.

I am going to write one for our local paper. I have been meaning to, but put it off. It is now time. It is a small paper, small community, in a large city. I think I can get some attention from it.

[santaclaus]

I just read that the Today Show commented on how the caretakers should be held responsible because they were not watching him. Did the Today Show really imply this?

A couple of things. First off, the Today Show should not be allowed to talk about seizures, ever!! After all, their news team finds seizures funny ( yes, I am referring to the infamous Al Roker comment)

Second, I spent my life having seizures in the shower, often times smashing my head into a tub. My mother used to eat breakfast and listen to me fall. But there was nothing she could do, and I think by trying to put the blame on on someone else, we are taking away from the severity of this illness. This illness kills people, and that is the sad fact. I am hearing all of this stuff about meds, and how they could have prevented his death. Well, I read all of the time people that die of Sudden Unexplained Death in Epilepsy, and I don't think everyone one of them died as a result of not taking meds.

By the way, how come Sudden Unexplained Death in Epilepsy was never mentioned at all by one in the press? From what I understand, Sudden Unexplained Death in Epilepsy normally happens in a person's sleep, but couldn't this all be the case here? I am asking, because I don't know. IF someone could clear that up, that would be great.

[paradise survivor]

Hey Robin, I just found the regular o'reilly email address-I think if he gets enough, he or the staff will read it and MAYBE do something about the misinformation.