Epilepsy..... Something new?

[liberalitch]

I was talking with my world history class today after a test and the subject of Travolta's son came up. None of us seemed to know if he was a diagnosed epileptic or not but everyone guessed that he was one and should have been on anti-seizure medication. They asked me if his religious beliefs prevented this,... I told them I wasn't sure but it might have prevented "standard treatment".
Then one of my kids told the class she was epileptic (I knew, it's just her choice to speak publicly of course) and that not only does she take a pill each day BUT she has an inhaler that she hits when she feels "funky"(I guess one coming on). She said she hasn't had a seizure in three years. I have never heard of the inhaler.... Have you?

[no_hypocrisy]

1. Unsure of the inhaler but I know that ketogenic diets have been tried on

some epileptic patients with varying degrees of success.

[blueraven95]

2. it wasn't epilepsy.

I've forgotten the name of what it was, but it definitely wasn't reported as epilepsy.

Reports also said that scientology in no way affected the medical treatment of Jett Travolta. I obviously have no way of confirming or denying that, just passing along what I read.

[pnwmom]

6. Actually, he did have epilepsy and he died of a seizure.

Kawasaki's syndrome was something he had had as a toddler, but most doctors thought it was extremely unlikely to be related to the seizures he developed later on.

On the other hand, many people who observed him throughout the years thought he had some degree of autism, which IS associated a high rate of epilepsy.

[blueraven95]

8. I hadn't heard that

I was under the impression that what was going on with him all related to the syndrome. But then again, I really didn't pay all that much attention beyond the "that's sad". :shrug:

[pnwmom]

11. The reason you had that impression is because that's the impression

they wanted you to have.

The Travoltas never were able to acknowledge their son had autism -- even though John Travolta's own brother did a documentary on autism, and tried to convince them. The problem is that Scientology doesn't believe in the existence of the disease at all, and not in any kind of psychiatric care.

If they'd been able to acknowledge the autism, then they would have understood that the epilepsy was related (up to 40% of autistics have epilepsy). But since they couldn't, they convinced themselves that all of Jett's many "differences" (including the autistic like behavior and the seizures) were caused by Kawasaki syndrome, the disease that he'd -- and recovered from -- as a toddler.

[SoCalDem]

13. I read somewhere that he did not speak..

and for a 16 year old to have two "aides" with him 24-7, means that there was something serious going on..The family was fortunate to have the money to pay those aides, but in the end even they could not prevent what happened..

regardless of what happened, or what people think happened, it's over for him, and now the family has to concentrate on their daughter and get on with their lives..

They are the ones who lived with him, and took care of him, and they are also the ones who will tell his story, if they choose to...and it's really only their business..

I have known many parents through the years who have come to terms with a handicapped child's issues, and they deal with it in their own way and in their own time..

[Maine-ah]

3. he was on meds

according to a report from CNN last night that I saw, but he had been on them so long they were losing their effectiveness. Scientologists don't believe in meds for conditions such as depression or other mental illnesses. They do allow meds for phyisical conditions such as Jett Travolta's.

[Ocracoker16]

4. he had stopped meds

He took Depakote, but it stopped working so he went off of it. He wasn't on it when he died.

[pnwmom]

7. I heard that, too. But the report mentioned only one drug, Depakote.

It's not unusual for an epilepsy drug to lose effectiveness over the years, but there are more than 20 others to try. If the report was accurate, I'm surprised they didn't put him on something else (or a combination of other drugs) when the Depakote stopped working.

[MADem]

5. No brain medications allowed. That includes depression, bipolar, epilepsy....

If there's something wrong with your brain, you see, it's your fault! You have to pay money to the cult and get "audited" to fix your problems...and if that doesn't work, why, you just aren't trying hard enough.

That's the cult's tenets.

I've never seen inhaler therapy as a treatment, I seem to remember reading about clinical trials using inhaled medication long ago but never noticed if the medication was successful or hit the market. If they've come up with something like that, that's great news.

[juno jones]

9. If you are truly interested

try the forums over at zenu.net http://ocmb.xenu.net/ocmb/ (operation clambake)

There are a lot of former scientologists who post there who can give some insight, both as far as Jett's observed behavior and the stance of scientology toward epilepsy.

Scientology frowns on medications of just about any kind, because once you are 'clear', you should never be sick. There's a pretty well documented history of people within the org dying from seizures, untreated cancer, etc due to these beliefs. (There's also some more shall we say, suspicious, deaths linked to scientology, but I digress)

I thought this quote (from an apparent believer)was pretty sick

This is just heartbreaking. Now that Jett's Thetan is free from his damaged meat body, he will be on the look out for a pregnant woman. I predict that the Travoltas will either have or adopt a baby in 2009 to give their beloved son a place to land.

italics mine

I just love the damaged 'meat body' bit, but it's par for the course in scientology. Jett may have gotten some help since his 'meat body' was already damaged and not purifiable, but epilepsy drugs are uncomfortably close to psych drugs and many higher-ups won't authorize their use. In fact you have to get permission to take an aspirin.

There is also recent video of Jett. No, I am no doctor, but I have a son on the spectrum and have been around autistic children and Jett has a lot of the mannerisms associated with autism.

I highly reccomend this website to anyone with questions about this spurious 'religion'. It's an eye-opener. Look up some terms like 'wogs' and 'fair play' and scientologists just don't seem so fuzzy and kooky anymore.

[pnwmom]

12. Thanks Junofeb. How do they regard death in the elderly? Is this a failure, too?

I know an elderly woman who was kicked out of Sea Org after decades, on the grounds that she was too old to work. Do they try to detach members before they have a chance to die on them?

[juno jones]

15. 'Too old to work' wouldn't surprise me

There's an interesting and quite long-lived thread over there comparing the forced work and debt servitude rampant in scientology with the larger issue of Human Trafficking.

http://ocmb.xenu.net/ocmb/viewtopic.php?t=29678

There are several comments there and on other threads on how overseas converts are often exploited as near slave labor in the states and on their ships. There is currently a group of Polish workers who are suing because of poor working conditions and exposure to undisclosed asbestos and other chemicals.

About the only thing that scientology didn't seem to match up with was sexual exploitation. I guess for this we should be grateful. Not to say it doesn't happen on some levels, but I've read far few postings complaining about that from former scientologists than I have former fundies or even catholics. Scientology seems somewhat sex-negative and anti-child which is probably why they rely on recruitment a lot more than the 'grow 'em yourself' dominionists.

The really twisted thing about it is the 'blame the victim' mentality about disease and aging. If you got old or sick or otherwise unproductive, it is your fault for being a 'suppressive personality' who is willfully acting out against themselves, other scientologists, and the greater mission of scientology. Once labeled SP you are pretty much shunned from the community. The lucky ones get kicked to the curb. The unlucky ones die as the result of neglect and abuse in what can best be described as 're-education'.

http://www.whyaretheydead.net/

From what I can see, having read the testimonies of those involved and a smattering of LRH's work that scientology has fought so hard to keep unrevealed to those who simply would not understand his penchant for 'Master Race' ideology, there is no compassion in that 'religion'. Which makes me question it's validity as a spiritual path and tax exemption.

[cags]

10. My mom has epilepsy, she stopped taking anti seizure meds and went on a homeopathic regime...

because of the way the anti seizure meds made her feel.

I will tell you while on the anti seizure meds she still had seizures occasionally.
When she got off them and went on the homeopathic medicine (some kind of seaweed tablets I think) she stopped having siezures all together and felt 100 times better.

My point is she still had to treat herself in some way, she didn't just stop treating the condition all together. I don't know if the Travoltas had some other form of treatment or not, but I hope they did.

I watched my mom go through many siezures growing up and its not a fun experience.

I do find it odd that they listed Jetts cause of death as a seizure disorder though.
Usually you won't die from a siezure.

My brother also had epilepsy and he did die after having a seizure while he was alone, but the cause of his dying was the fact that he had choked on his tongue, and not from the actual seizure.

[kitty1]

14. Apparently Jett had an aversion to different smells......

and because of this they decided on non fragrant type flowers for his funeral.
I know that an aversion to smells can be a symptom on Autism, but perhaps that can apply to epilepsy as well.
My sister had to deal petit mall epilepsy (small duration) for most of her life, but she didn't have any Austism symptoms with it. She took phenobarbitol amoung other meds, but they could only do so much.
Now that she is in midlife, with hormone and other changes, the seizures have been pretty rare thankfully.