my son has seizures
 

Grand mal like Jett and my heart goes out to them we found meds that works but it took awile alot of these meds have very bad side effects liver .gums, hair, kidneys , skin ,and my son is thirty I pay 400.00 a month for his medical the meds he takes are 700.00 dollars a month while he functions in life no one wants to hire someone with seizures our country is fast to critisize but know the facts first meds dont always work

I did put in paranethesis "not you specifically". I was meaning a family member, friend, doctor, whoever. Do you know how many times I've just tried to TALK to someone about what I was feeling and I've been told to "get over it"?

I'm sorry about your grandson and I'm sorry you feel that he and his mom is using that as a crutch and maybe they are. I don't know and it's not for me or anyone else to judge. You know the saying, don't judge until you've walked a mile in their shoes. That kind of applies here. Trust me, it irritates me too when people use their problems as a way to get out of working and all that. I'm 21 and have had this problem all my life and got a job and have worked almost every day since I was 16. I've worked for everything I own, I'm married, work a full time job, then come home, and be a wife there. Right now, my husband is out of work, so I'm working double. In high school, I was going to school full time and working 3 jobs, volunteering at school on my ONLY day off, and was maintaining a relationship. I plan on having children in a couple years and trying to maintain a normal life. I don't want to be this way so I've decided I'm doing everything I can to avoid having to be that way, but that's just me.

I just wish people would be more understanding... that's all I was trying to get at. I wasn't trying to offend anyone. I've had a couple of "off" days this week and I just opened the wrong thread at the wrong time. :)

Most mother's would never intentionally endanger their child but sadly there are plenty of cases of children suffering (and even dying) due to IMO horribly misguided religious beliefs. Google 'religion medical intervention' and you will find more sad stories of children dying due to their parents' religious beliefs than you would ever want to know exist. To be more specific to this instance you can google 'Scientology deaths'- there are a lot of them.

This thread has ended up debating over medicating and misdiagnosis which I agree does seem to be a problem but it certainly wasn't the case with Jett. I'm not saying he died because of Scientology but I think at the very least his quality of life suffered and I think it is justifiable for people to wonder.

My heart goes out to you and your son. I can't imagine how horrible and scary that must be. It sounds like you have worked very hard and spent and continue to spend a lot of money trying to find something to help your son and I'm sure you have far less resources than the Travoltas.

But here's something too... everyone is up in arms about scientology and medications and all of that... but what about other religions that don't allow certain lifesaving precedures, like blood transfusions? Or the religions that don't allow certain jewelry to be taken off despite the risks in surgery? Those things can and have caused deaths too and it hasn't been a huge debate. I think it's because a) who he is, b) the religion is somewhat "unknown" to a lot of people and c)he's a child.

Definitely because he's public figure and also I think because Scientology is a larger more generally heard of religion. When I googled 'religion medical intervention' most of the stories were of religions I hadn't heard of and that most people would write off as bizarre cults (which I believe describes Scientology). Anytime people are dying, especially children, we should pay attention and should be up in arms.

No, I agree, but I just think it's funny how media draws attention to one aspect of things, but just completely forgets about the HUNDREDS of things that have happened before that one thing.

That's very true. So often it's celebrities who bring things (good and bad) to the public's eye but that shouldn't be the case with children suffering or dying. Maybe this will raise awareness overall. No matter what it's horrifically tragic.:(

Interesting...

Could Jett have been saved? | The Sun |News
Could Jett have been saved?
By EMILY SMITH
US Editor
Published: 07 Jan 2009


JETT Travolta's decision to stop taking anti-seizure medication was a FATAL mistake, some medics claim.

The Travolta's lawyer Michael McDermott said Jett had been prescribed the anti-seizure drug Depakote, but had stopped taking it after it became less effective and following fears of liver damage.
But specialists say he should never have stopped taking it, and should have tried a different anti-seizure drug.


Jett, who suffered fits, was found slumped in a bathroom last Friday at the family’s Bahamas holiday home.
Dr Yousef Mohammad, who has not treated Jett, said: "It is highly dangerous to take a patient off seizure medication.
"The only time we do that is if the patient has been seizure-free for two to three years."
The neurologist and assistant professor at Ohio State Medical Center in Columbus added: "Depakote can rarely cause liver damage. But there are many alternatives.
"I would switch to Keppra, which is excreted by the kidneys, not the liver and is very safe.
"There are many new medications available...but you do not stop medication."

Also interesting
Scientology --- Scientology Kills Epileptics-- Heribert Pfaff

I would dare say that more deaths have occured (in this country) and more children have suffered more than they should from side effects, and more children have been hurt by prescription and over the counter drugs. The FDA and Big Pharma has more power than most people know, and things get swept under the rug all the time. Look how many kids have died from cough medicine alone! IMO thats like saying that Airplanes should be banned because some people have died while flying, when more people die in car accidents every day.
I think it's sad that these parents are mourning and people are speculating whether they could have done more to save him. I think that's sick. If it were a blatent neglect where the parents were crack heads and left a kid out in the snow to freeze to death I could understand, but these were loving parents that were doing what was in the best interest for their child. I really don't care about any doctor that was interviewed saying that it could have been prevented and to never stop meds, they get perks from pharmacutical companies to push their drugs. I also don't care what some website says. I can find websites that say that "experts say" that you will get cancer from cheese, or water, or leaf lettuce or that so and so is the next messiah.
I do believe that the Scientology religion is a joke, but I don't think that these parents were unfit for what they did.

I feel we over medicate in the US.

Drug companies are big business and strong political control.

It all boils down to making money and not the health of Americans.

:thumbup::thumbup:

AMEN to that.

Well I'm certainly sorry that you think I'm sick but it seems pretty obvious based on past interviews by Kelly Preston, people who had personal contact with this poor child and the ultimate outcome that they were in all likelyhood not doing what was in the best interest for their child. Not treating your children for illnesses whether admitted ones (grand mal seizures) or ones you're in denial about because your religion tells you it doesn't exist (autism) is blatant neglect. It has no baring on this case if you care what general medical consensus is or not. If they had continued to try other medications to treat his seizures, per standard medical protocol, he very well could be alive today. If they had faced the reality that he had some sort of psychological disorder be it autism or something else he would have had a chance to be a functional, happy teenager instead of a mute teenager who was unable to be taken out in public. Instead they opted to treat him with purification rituals prescribed by a science fiction writer with no medical training involving dangerously high levels of vitamins known to cause liver damage. I do feel for them as I would any parent experiencing this kind of horror and I have no doubt that they loved him very much and are suffering a great deal but people in this religion are brainwashed and there are other children involved in this religion that need some consideration as well. The children have no say and they deserve to be protected.

I agree also but that clearly wasn't the case in this situation. Some disorders do have to be treated medically and grand mal seizures definitely fall into that category. The outcome in this situation shows what can happen if you don't.