Re: I can't take it anymore!!!!! Help!!

[Guest guest]

seizure meds did not work for me. we finally saw some progress

doing...taurine, B6, biotin,threelac and magnesium

On Jan 10, 2009, at 12:37 PM, Rhonda wrote:

> I have 2 boys with autism, the oldest is 9. He has uncontrollable

> seizures and has had this

> condition since he was 2! We are afraid that we may lose him if we

> don't gain control over

> these crippling seizures! He has tried 10 anticonvulsants that

> don't work. He is currently

> taking Ativan and has for the last 2 years, and he is still having

> seizures...but Ativan is

> such an addictive drug that if we even try to wean him off of it,

> he goes into seizures.

>

> So...our options are Neurofeedback? Ketogenic diet? What should we

> do? Does anyone

> have any ideas? He is so beautiful...this is just devastating! How

> can we go on like this?

> Then everyone who knows us has to call and say, " did you hear what

> happened to

> Travolta's son? " Yes, we heard and we have been living this

> nightmare for the last 7

> years!!

>

> We would like to get him involved with the MIND Institute, but they

> have refused our

> inquiry because they are booked with kids, supposedly.

>

> Does anyone have a contact for a Neurofeedback specialist in the

> central California region

> around Sacramento or Stockton area? Will this even work? More $$

> down the drain?

>

> We bought a $25,000 hyperbaric oxygen chamber, thinking that would

> help. I have done

> about 120 dives and still his seizures are prevalent.

>

> Any ideas would help!

>

> Thank you! Rhonda

>

>

>

[Guest guest]

Are you looking for non-invasive treatment? Or surgical intervention? We

had a VNS (Vagus Nerve Stimulator) implanted in our son in July and it has

been a " God send " !! We went from 30-40 seizures a day to 1 or 2 if that.

Some days he doesn't have any and some days he has a few, but not more than

5 at the most. We have had the settings changed each month since the

implant and the neurologist says we have a long way to go before it is amped

all the way up. We are hoping to reach a level where we can start weaning

him off his 5 meds (Keppra, Klonopin, Depakote, Zonegran & Topamax).

The Travolta families' tragedy affects us all, but we must remember that

every child w/ seizures (and Autism) is different, just like snowflakes.

Every medicine, vitamin, mineral, and alternative therapy will affect them

all differently and there doesn't appear to be a " quick " remedy to any of

it. The seizures themselves are different - some are life threatening and

some are not.

Litzelman

Mother of Cody, age 14 (multihandicapped w/ CP, Epilepsy, & MR) and Caleb,

age 12 (High Functioning Autistic)

_____

From: [mailto: ]

On Behalf Of Rhonda

Sent: Saturday, January 10, 2009 1:38 PM

Subject: [ ] I can't take it anymore!!!!! Help!!

I have 2 boys with autism, the oldest is 9. He has uncontrollable seizures

and has had this

condition since he was 2! We are afraid that we may lose him if we don't

gain control over

these crippling seizures! He has tried 10 anticonvulsants that don't work.

He is currently

taking Ativan and has for the last 2 years, and he is still having

seizures...but Ativan is

such an addictive drug that if we even try to wean him off of it, he goes

into seizures.

So...our options are Neurofeedback? Ketogenic diet? What should we do? Does

anyone

have any ideas? He is so beautiful...this is just devastating! How can we go

on like this?

Then everyone who knows us has to call and say, " did you hear what happened

to

Travolta's son? " Yes, we heard and we have been living this nightmare for

the last 7

years!!

We would like to get him involved with the MIND Institute, but they have

refused our

inquiry because they are booked with kids, supposedly.

Does anyone have a contact for a Neurofeedback specialist in the central

California region

around Sacramento or Stockton area? Will this even work? More $$ down the

drain?

We bought a $25,000 hyperbaric oxygen chamber, thinking that would help. I

have done

about 120 dives and still his seizures are prevalent.

Any ideas would help!

Thank you! Rhonda

[Guest guest]

>

> > I have 2 boys with autism, the oldest is 9. He has uncontrollable

> > seizures and has had this

> > condition since he was 2! We are afraid that we may lose him if we

> > don't gain control over

> > these crippling seizures! He has tried 10 anticonvulsants that

> > don't work. He is currently

> > taking Ativan and has for the last 2 years, and he is still having

> > seizures...but Ativan is

> > such an addictive drug that if we even try to wean him off of it,

> > he goes into seizures.

> >

> > So...our options are Neurofeedback? Ketogenic diet? What should we

> > do? Does anyone

> > have any ideas? He is so beautiful...this is just devastating! How

> > can we go on like this?

> > Then everyone who knows us has to call and say, " did you hear what

> > happened to

> > Travolta's son? " Yes, we heard and we have been living this

> > nightmare for the last 7

> > years!!

> >

> > We would like to get him involved with the MIND Institute, but they

> > have refused our

> > inquiry because they are booked with kids, supposedly.

> >

> > Does anyone have a contact for a Neurofeedback specialist in the

> > central California region

> > around Sacramento or Stockton area? Will this even work? More $$

> > down the drain?

> >

> > We bought a $25,000 hyperbaric oxygen chamber, thinking that would

> > help. I have done

> > about 120 dives and still his seizures are prevalent.

> >

> > Any ideas would help!

> >

> > Thank you! Rhonda

> >

> >

> >

> I had uncontrollable seizures for many years. Doctors were unable to locate

any meds

that were effective in controlling the seizures. Finally I found that a side

effect of my

meds was that the magnesium in my body was too low. I started taking magnesium,

and

found immediate improvement, but the seizures continued to occur. The problem

was

still the magnesium. I determined that the magnesium levels in my body were

very low,

and almost every day that I added magnesium, the amount remaining in my system

was

gone every day. It is very important to measure your magnesium levels, because

every

time my levels were too low, a seizure would occur. Check your Vitamin D

levels. Vitamin

D is needed to process Calcium, which will have an effect on the magnesium.

>

>

>

[Guest guest]

ASD-Enviro/

For new ideas for seizures

> I have 2 boys with autism, the oldest is 9. He has uncontrollable

> seizures and has had this

> condition since he was 2! We are afraid that we may lose him if we

> don't gain control over

> these crippling seizures! He has tried 10 anticonvulsants that

> don't work. He is currently

> taking Ativan and has for the last 2 years, and he is still having

> seizures...but Ativan is

> such an addictive drug that if we even try to wean him off of it,

> he goes into seizures.

>

> So...our options are Neurofeedback? Ketogenic diet? What should we

> do? Does anyone

> have any ideas? He is so beautiful... this is just devastating! How

> can we go on like this?

> Then everyone who knows us has to call and say, " did you hear what

> happened to

> Travolta's son? " Yes, we heard and we have been living this

> nightmare for the last 7

> years!!

>

> We would like to get him involved with the MIND Institute, but they

> have refused our

> inquiry because they are booked with kids, supposedly.

>

> Does anyone have a contact for a Neurofeedback specialist in the

> central California region

> around Sacramento or Stockton area? Will this even work? More $$

> down the drain?

>

> We bought a $25,000 hyperbaric oxygen chamber, thinking that would

> help. I have done

> about 120 dives and still his seizures are prevalent.

>

> Any ideas would help!

>

> Thank you! Rhonda

>

>

>

[Guest guest]

>

> >

>

> > > I have 2 boys with autism, the oldest is 9. He has

uncontrollable

>

> > > seizures and has had this

>

> > > condition since he was 2! We are afraid that we may lose him if

we

>

> > > don't gain control over

>

> > > these crippling seizures! He has tried 10 anticonvulsants that

>

> > > don't work. He is currently

>

> > > taking Ativan and has for the last 2 years, and he is still

having

>

> > > seizures...but Ativan is

>

> > > such an addictive drug that if we even try to wean him off of

it,

>

> > > he goes into seizures.

>

> > >

>

> > > So...our options are Neurofeedback? Ketogenic diet? What should

we

>

> > > do? Does anyone

>

> > > have any ideas? He is so beautiful... this is just devastating!

How

>

> > > can we go on like this?

>

> > > Then everyone who knows us has to call and say, " did you hear

what

>

> > > happened to

>

> > > Travolta's son? " Yes, we heard and we have been living this

>

> > > nightmare for the last 7

>

> > > years!!

>

> > >

>

> > > We would like to get him involved with the MIND Institute, but

they

>

> > > have refused our

>

> > > inquiry because they are booked with kids, supposedly.

>

> > >

>

> > > Does anyone have a contact for a Neurofeedback specialist in

the

>

> > > central California region

>

> > > around Sacramento or Stockton area? Will this even work? More

$$

>

> > > down the drain?

>

> > >

>

> > > We bought a $25,000 hyperbaric oxygen chamber, thinking that

would

>

> > > help. I have done

>

> > > about 120 dives and still his seizures are prevalent.

>

> > >

>

> > > Any ideas would help!

>

> > >

>

> > > Thank you! Rhonda

>

> > >

>

> > >

>

> > >

>

> > I had uncontrollable seizures for many years. Doctors were

unable to locate any meds

>

> that were effective in controlling the seizures. Finally I found

that a side effect of my

>

> meds was that the magnesium in my body was too low. I started

taking magnesium, and

>

> found immediate improvement, but the seizures continued to occur.

The problem was

>

> still the magnesium. I determined that the magnesium levels in my

body were very low,

>

> and almost every day that I added magnesium, the amount remaining

in my system was

>

> gone every day. It is very important to measure your magnesium

levels, because every

>

> time my levels were too low, a seizure would occur. Check your

Vitamin D levels. Vitamin

>

> D is needed to process Calcium, which will have an effect on the

magnesium.

>

> >

>

> >

>

> >

[Guest guest]

>

> >

>

> > > I have 2 boys with autism, the oldest is 9. He has

uncontrollable

>

> > > seizures and has had this

>

> > > condition since he was 2! We are afraid that we may lose him if

we

>

> > > don't gain control over

>

> > > these crippling seizures! He has tried 10 anticonvulsants that

>

> > > don't work. He is currently

>

> > > taking Ativan and has for the last 2 years, and he is still

having

>

> > > seizures...but Ativan is

>

> > > such an addictive drug that if we even try to wean him off of

it,

>

> > > he goes into seizures.

>

> > >

>

> > > So...our options are Neurofeedback? Ketogenic diet? What should

we

>

> > > do? Does anyone

>

> > > have any ideas? He is so beautiful... this is just devastating!

How

>

> > > can we go on like this?

>

> > > Then everyone who knows us has to call and say, " did you hear

what

>

> > > happened to

>

> > > Travolta's son? " Yes, we heard and we have been living this

>

> > > nightmare for the last 7

>

> > > years!!

>

> > >

>

> > > We would like to get him involved with the MIND Institute, but

they

>

> > > have refused our

>

> > > inquiry because they are booked with kids, supposedly.

>

> > >

>

> > > Does anyone have a contact for a Neurofeedback specialist in

the

>

> > > central California region

>

> > > around Sacramento or Stockton area? Will this even work? More

$$

>

> > > down the drain?

>

> > >

>

> > > We bought a $25,000 hyperbaric oxygen chamber, thinking that

would

>

> > > help. I have done

>

> > > about 120 dives and still his seizures are prevalent.

>

> > >

>

> > > Any ideas would help!

>

> > >

>

> > > Thank you! Rhonda

>

> > >

>

> > >

>

> > >

>

> > I had uncontrollable seizures for many years. Doctors were

unable to locate any meds

>

> that were effective in controlling the seizures. Finally I found

that a side effect of my

>

> meds was that the magnesium in my body was too low. I started

taking magnesium, and

>

> found immediate improvement, but the seizures continued to occur.

The problem was

>

> still the magnesium. I determined that the magnesium levels in my

body were very low,

>

> and almost every day that I added magnesium, the amount remaining

in my system was

>

> gone every day. It is very important to measure your magnesium

levels, because every

>

> time my levels were too low, a seizure would occur. Check your

Vitamin D levels. Vitamin

>

> D is needed to process Calcium, which will have an effect on the

magnesium.

>

> >

>

> >

>

> >

[Guest guest]

I'm very sorry that you feel so badly. I don't have ep, my ten year

old does. I often wonder how life will be for her. She seems to be

pretty well off for the most part but she's still young and I have no

idea how this will affect her life with driving, etc, someday.

My heart goes out to you although I have no practical advice.

>

> >

>

> > > I have 2 boys with autism, the oldest is 9. He has

uncontrollable

>

> > > seizures and has had this

>

> > > condition since he was 2! We are afraid that we may lose him if

we

>

> > > don't gain control over

>

> > > these crippling seizures! He has tried 10 anticonvulsants that

>

> > > don't work. He is currently

>

> > > taking Ativan and has for the last 2 years, and he is still

having

>

> > > seizures...but Ativan is

>

> > > such an addictive drug that if we even try to wean him off of

it,

>

> > > he goes into seizures.

>

> > >

>

> > > So...our options are Neurofeedback? Ketogenic diet? What should

we

>

> > > do? Does anyone

>

> > > have any ideas? He is so beautiful... this is just devastating!

How

>

> > > can we go on like this?

>

> > > Then everyone who knows us has to call and say, " did you hear

what

>

> > > happened to

>

> > > Travolta's son? " Yes, we heard and we have been living this

>

> > > nightmare for the last 7

>

> > > years!!

>

> > >

>

> > > We would like to get him involved with the MIND Institute, but

they

>

> > > have refused our

>

> > > inquiry because they are booked with kids, supposedly.

>

> > >

>

> > > Does anyone have a contact for a Neurofeedback specialist in

the

>

> > > central California region

>

> > > around Sacramento or Stockton area? Will this even work? More

$$

>

> > > down the drain?

>

> > >

>

> > > We bought a $25,000 hyperbaric oxygen chamber, thinking that

would

>

> > > help. I have done

>

> > > about 120 dives and still his seizures are prevalent.

>

> > >

>

> > > Any ideas would help!

>

> > >

>

> > > Thank you! Rhonda

>

> > >

>

> > >

>

> > >

>

> > I had uncontrollable seizures for many years. Doctors were

unable to locate any meds

>

> that were effective in controlling the seizures. Finally I found

that a side effect of my

>

> meds was that the magnesium in my body was too low. I started

taking magnesium, and

>

> found immediate improvement, but the seizures continued to occur.

The problem was

>

> still the magnesium. I determined that the magnesium levels in my

body were very low,

>

> and almost every day that I added magnesium, the amount remaining

in my system was

>

> gone every day. It is very important to measure your magnesium

levels, because every

>

> time my levels were too low, a seizure would occur. Check your

Vitamin D levels. Vitamin

>

> D is needed to process Calcium, which will have an effect on the

magnesium.

>

> >

>

> >

>

> >

[Guest guest]

Hi Rhonda,

Dr.Donna andrews,Phd is a counselor who controlled her epilepsy with

biofeedback techniques, i do not know if she takes children though.

She Was in CALIFORNIA

THE last email I HAD FOR her ; _djandrew@..._

(mailto:djandrew@...) .

By the way, if you have a hyperbaric chamber maybe some other people on the

list can use it and help defray your large layout for it. A LOT OF PEOPLE

ARE LOOKINGB FOR A FACILITY THAT HAS ONE AND WILL USE IT FOR THEM.

ARNOLD

**************New year...new news. Be the first to know what is making

headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

[Guest guest]

They have a cleanse on Dr. Natura for children. Homeopathic is where you should

go. The children's body is toxic because YOU were toxic in your body. We don't

think why are my kids sick because we were sick or toxic while we were carrying

them. It all starts in womb, its simple as that. Keep pursuing homeopathic until

you have your answer.

Kid Detox

" Namaste "

Tia

" Where there is hope there is time, Where there is time there is hope " T.R.

________________________________

From: Rhonda <designbybuess@...>

Sent: Saturday, January 10, 2009 10:37:48 AM

Subject: [ ] I can't take it anymore!!!!! Help!!

I have 2 boys with autism, the oldest is 9. He has uncontrollable seizures and

has had this

condition since he was 2! We are afraid that we may lose him if we don't gain

control over

these crippling seizures! He has tried 10 anticonvulsants that don't work. He

is currently

taking Ativan and has for the last 2 years, and he is still having

seizures...but Ativan is

such an addictive drug that if we even try to wean him off of it, he goes into

seizures.

So...our options are Neurofeedback? Ketogenic diet? What should we do? Does

anyone

have any ideas? He is so beautiful... this is just devastating! How can we go

on like this?

Then everyone who knows us has to call and say, " did you hear what happened to

Travolta's son? " Yes, we heard and we have been living this nightmare for the

last 7

years!!

We would like to get him involved with the MIND Institute, but they have refused

our

inquiry because they are booked with kids, supposedly.

Does anyone have a contact for a Neurofeedback specialist in the central

California region

around Sacramento or Stockton area? Will this even work? More $$ down the

drain?

We bought a $25,000 hyperbaric oxygen chamber, thinking that would help. I have

done

about 120 dives and still his seizures are prevalent.

Any ideas would help!

Thank you! Rhonda

[Guest guest]

Amen, Tia! All the work you've done...you sound seriously

empowered!!! I hope your mode will give others here who are reading,

hope. You sound surprised to have someone to be engaged to! All of

us are valuable souls. It should be no surprise. You sound like a

pro-active person, of course someone would snatch you up!

My daughter's are controlled pretty nicely and we do a lot of the

things you do - library - Dr. Mercola (He's a major favorite), we

keep the nutrition in check and have done food sensitivity panels.

She does not eat the Standard American Diet, she eats whole foods

(ok, we give in to a piece of dark chocolate here and there and maybe

potato chips) but we do also get her vitamin levels checked as well.

We aren't popular for sleepovers. Birthday parties are mostly out of

the question because she's gluten and dairy free. And I don't want

that much sugar in her body at once. We are invited to eat out

frequently but politely say no thank you and meet out for movies or

something instead. She fights me on the leafy greens but you can cut

up anything small enough for someone to tolerate. She's been a life

long vegetarian and I have been since 1992. We do eat organic eggs

though.

And Tia's right - some of the good foods are not expensive. Collard

greens, mustard greens, kale...these things are cheap enough without

being organic but the organic versions are cheap too. Lentils are

very cheap and you get a lot out of them. Brown rice is fairly cheap

for what it yields.

I keep a lot of jazz, native american, classical and lots of 'new

agey' music around. We do yoga and pilates and I read everything I

can on the new thought of positivity creating your own destiny. I'm

trying to teach her meditation but she's ten....so....at least she

knows about it even if she can't sit for too long. We all have to

just keep plugging away to find what works for us. We definitely see

a homeopath and a chiropractor. We are going to see an integrative

medicine doctor hopefully within the next month. She is the best of

both worlds from what I understand - conventional medicine with

alternative therapies.

and most of all, its SO important to ingrain these things in our

kids - whatever holistically is working - so that they are strong

enough to stand up to the kids at school. They tease my daughter

about not having this or that but she knows she'd rather not seize.

One day at a time.

Bless you all ~

Dawn &

> >

> > >

> >

> > > > I have 2 boys with autism, the oldest is 9. He has

> uncontrollable

> >

> > > > seizures and has had this

> >

> > > > condition since he was 2! We are afraid that we may lose him

if

> we

> >

> > > > don't gain control over

> >

> > > > these crippling seizures! He has tried 10 anticonvulsants

that

> >

> > > > don't work. He is currently

> >

> > > > taking Ativan and has for the last 2 years, and he is still

> having

> >

> > > > seizures...but Ativan is

> >

> > > > such an addictive drug that if we even try to wean him off of

> it,

> >

> > > > he goes into seizures.

> >

> > > >

> >

> > > > So...our options are Neurofeedback? Ketogenic diet? What

should

> we

> >

> > > > do? Does anyone

> >

> > > > have any ideas? He is so beautiful... this is just

devastating!

> How

> >

> > > > can we go on like this?

> >

> > > > Then everyone who knows us has to call and say, " did you hear

> what

> >

> > > > happened to

> >

> > > > Travolta's son? " Yes, we heard and we have been living this

> >

> > > > nightmare for the last 7

> >

> > > > years!!

> >

> > > >

> >

> > > > We would like to get him involved with the MIND Institute,

but

> they

> >

> > > > have refused our

> >

> > > > inquiry because they are booked with kids, supposedly.

> >

> > > >

> >

> > > > Does anyone have a contact for a Neurofeedback specialist in

> the

> >

> > > > central California region

> >

> > > > around Sacramento or Stockton area? Will this even work? More

> $$

> >

> > > > down the drain?

> >

> > > >

> >

> > > > We bought a $25,000 hyperbaric oxygen chamber, thinking that

> would

> >

> > > > help. I have done

> >

> > > > about 120 dives and still his seizures are prevalent.

> >

> > > >

> >

> > > > Any ideas would help!

> >

> > > >

> >

> > > > Thank you! Rhonda

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > I had uncontrollable seizures for many years. Doctors were

> unable to locate any meds

> >

> > that were effective in controlling the seizures. Finally I found

> that a side effect of my

> >

> > meds was that the magnesium in my body was too low. I started

> taking magnesium, and

> >

> > found immediate improvement, but the seizures continued to occur.

> The problem was

> >

> > still the magnesium. I determined that the magnesium levels in

my

> body were very low,

> >

> > and almost every day that I added magnesium, the amount remaining

> in my system was

> >

> > gone every day. It is very important to measure your magnesium

> levels, because every

> >

> > time my levels were too low, a seizure would occur. Check your

> Vitamin D levels. Vitamin

> >

> > D is needed to process Calcium, which will have an effect on the

> magnesium.

> >

> > >

> >

> > >

> >

> > >

[Guest guest]

yu might wanna check out this site-http://www.healthsentinel.com I find

when my blood acid levels are soaring i get seizures and feel horrible.

Check ou this link and use the search tab. Sure hope this is helpful.

feel free to ask any questions....

Rhonda wrote:

>

> I have 2 boys with autism, the oldest is 9. He has uncontrollable

> seizures and has had this

> condition since he was 2! We are afraid that we may lose him if we

> don't gain control over

> these crippling seizures! He has tried 10 anticonvulsants that don't

> work. He is currently

> taking Ativan and has for the last 2 years, and he is still having

> seizures...but Ativan is

> such an addictive drug that if we even try to wean him off of it, he

> goes into seizures.

>

> So...our options are Neurofeedback? Ketogenic diet? What should we do?

> Does anyone

> have any ideas? He is so beautiful...this is just devastating! How can

> we go on like this?

> Then everyone who knows us has to call and say, " did you hear what

> happened to

> Travolta's son? " Yes, we heard and we have been living this nightmare

> for the last 7

> years!!

>

> We would like to get him involved with the MIND Institute, but they

> have refused our

> inquiry because they are booked with kids, supposedly.

>

> Does anyone have a contact for a Neurofeedback specialist in the

> central California region

> around Sacramento or Stockton area? Will this even work? More $$ down

> the drain?

>

> We bought a $25,000 hyperbaric oxygen chamber, thinking that would

> help. I have done

> about 120 dives and still his seizures are prevalent.

>

> Any ideas would help!

>

> Thank you! Rhonda

>

>

[Guest guest]

I'm wondering what dose yu took of magnesitm, b6 , taurine, biotin?

will appreciate yur reply.

>

> > I have 2 boys with autism, the oldest is 9. He has uncontrollable

> > seizures and has had this

> > condition since he was 2! We are afraid that we may lose him if we

> > don't gain control over

> > these crippling seizures! He has tried 10 anticonvulsants that

> > don't work. He is currently

> > taking Ativan and has for the last 2 years, and he is still having

> > seizures...but Ativan is

> > such an addictive drug that if we even try to wean him off of it,

> > he goes into seizures.

> >

> > So...our options are Neurofeedback? Ketogenic diet? What should we

> > do? Does anyone

> > have any ideas? He is so beautiful...this is just devastating! How

> > can we go on like this?

> > Then everyone who knows us has to call and say, " did you hear what

> > happened to

> > Travolta's son? " Yes, we heard and we have been living this

> > nightmare for the last 7

> > years!!

> >

> > We would like to get him involved with the MIND Institute, but they

> > have refused our

> > inquiry because they are booked with kids, supposedly.

> >

> > Does anyone have a contact for a Neurofeedback specialist in the

> > central California region

> > around Sacramento or Stockton area? Will this even work? More $$

> > down the drain?

> >

> > We bought a $25,000 hyperbaric oxygen chamber, thinking that would

> > help. I have done

> > about 120 dives and still his seizures are prevalent.

> >

> > Any ideas would help!

> >

> > Thank you! Rhonda

> >

> >

> >

>

>

>

>

[Guest guest]

If my blood acid levels are soaring that's just like i feel . See if

yur blood sugar is low also.. High acid levels and low sugar make me

feel just like it./ Let's not forget God in all this he's been my

strength and help throughout....

> >

> > >

> >

> > > > I have 2 boys with autism, the oldest is 9. He has

> uncontrollable

> >

> > > > seizures and has had this

> >

> > > > condition since he was 2! We are afraid that we may lose him if

> we

> >

> > > > don't gain control over

> >

> > > > these crippling seizures! He has tried 10 anticonvulsants that

> >

> > > > don't work. He is currently

> >

> > > > taking Ativan and has for the last 2 years, and he is still

> having

> >

> > > > seizures...but Ativan is

> >

> > > > such an addictive drug that if we even try to wean him off of

> it,

> >

> > > > he goes into seizures.

> >

> > > >

> >

> > > > So...our options are Neurofeedback? Ketogenic diet? What should

> we

> >

> > > > do? Does anyone

> >

> > > > have any ideas? He is so beautiful... this is just devastating!

> How

> >

> > > > can we go on like this?

> >

> > > > Then everyone who knows us has to call and say, " did you hear

> what

> >

> > > > happened to

> >

> > > > Travolta's son? " Yes, we heard and we have been living this

> >

> > > > nightmare for the last 7

> >

> > > > years!!

> >

> > > >

> >

> > > > We would like to get him involved with the MIND Institute, but

> they

> >

> > > > have refused our

> >

> > > > inquiry because they are booked with kids, supposedly.

> >

> > > >

> >

> > > > Does anyone have a contact for a Neurofeedback specialist in

> the

> >

> > > > central California region

> >

> > > > around Sacramento or Stockton area? Will this even work? More

> $$

> >

> > > > down the drain?

> >

> > > >

> >

> > > > We bought a $25,000 hyperbaric oxygen chamber, thinking that

> would

> >

> > > > help. I have done

> >

> > > > about 120 dives and still his seizures are prevalent.

> >

> > > >

> >

> > > > Any ideas would help!

> >

> > > >

> >

> > > > Thank you! Rhonda

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > I had uncontrollable seizures for many years. Doctors were

> unable to locate any meds

> >

> > that were effective in controlling the seizures. Finally I found

> that a side effect of my

> >

> > meds was that the magnesium in my body was too low. I started

> taking magnesium, and

> >

> > found immediate improvement, but the seizures continued to occur.

> The problem was

> >

> > still the magnesium. I determined that the magnesium levels in my

> body were very low,

> >

> > and almost every day that I added magnesium, the amount remaining

> in my system was

> >

> > gone every day. It is very important to measure your magnesium

> levels, because every

> >

> > time my levels were too low, a seizure would occur. Check your

> Vitamin D levels. Vitamin

> >

> > D is needed to process Calcium, which will have an effect on the

> magnesium.

> >

> > >

> >

> > >

> >

> > >

[Guest guest]

Have you looked into Modified Atkins Diet? It is less strict than

keto, with the same results. Several studies completed at

Hopkins proving the efficacy, at least 2 studies on children.

Email me if you would like moore info. =)

>

> I have 2 boys with autism, the oldest is 9. He has uncontrollable

seizures and has had this

> condition since he was 2! We are afraid that we may lose him if we

don't gain control over

> these crippling seizures! He has tried 10 anticonvulsants that

don't work. He is currently

> taking Ativan and has for the last 2 years, and he is still having

seizures...but Ativan is

> such an addictive drug that if we even try to wean him off of it,

he goes into seizures.

>

> So...our options are Neurofeedback? Ketogenic diet? What should

we do? Does anyone

> have any ideas? He is so beautiful...this is just devastating!

How can we go on like this?

> Then everyone who knows us has to call and say, " did you hear what

happened to

> Travolta's son? " Yes, we heard and we have been living this

nightmare for the last 7

> years!!

>

> We would like to get him involved with the MIND Institute, but they

have refused our

> inquiry because they are booked with kids, supposedly.

>

> Does anyone have a contact for a Neurofeedback specialist in the

central California region

> around Sacramento or Stockton area? Will this even work? More $$

down the drain?

>

> We bought a $25,000 hyperbaric oxygen chamber, thinking that would

help. I have done

> about 120 dives and still his seizures are prevalent.

>

> Any ideas would help!

>

> Thank you! Rhonda

>

[Guest guest]

Hello,

I had to write to you because I have been in your

situation for many years and I am finally starting to see the light at

the end of the tunnel so I thought I would pass it on. 

First, a quick story about me.  When I was around 18 in 1989 I started having

petit mal seizures

and no one knew why or what brought them on.  Looking back, I remember

I was getting to the end of my high school years, and one day in

celebration, me and a bunch of friends went swimming.  And, in the

pool, I was so excited to be in the pool...swimming so fast, I did a

flip turn  no knowing there was a seating area in the pool and bumped

my head.  I walked off, trying not to make a big scene...just let the

pain go away on its own.  A couple of days later at a graduation party,

I remember having a few wine coolers...more than normal (that is not a

lot..but it was to me!) and I had a seizure.  I heard about it the next

day.  (Looking back and reading more about seizure causes, it could

have been an acid buildup in the brain...an area of tissue that was

disrupted and then the acids put in my body made it to the brain..and

seizures were formed).  Well, at the time I thought it was a one shot

deal and didn't tell mom and dad.  Well, time went on..a year or two

and I was going through college and living in France and I noticed they

were coming back...more often now.  So, I went to a doctor in France while I was

on my study abroad and to make a long story short, I was told I had epilepsy. 

I was put on pills and I thought that was it.  I got back to the U.S

and I was still having them.  At first, I wasn't the best about taking

the meds religiously...but as time went on, I WAS taking them...all of

them, like clock work.  And, still having seizures.  SO, in 1995, I had

brain surgery to help get " rid " of these seizures. Well, what the

surgery got rid of was my great memory and my ability to read. 

Following surgery I didn't know anyone's name...I didn't remember the

states...or even something basic like the word " flower. "   Well, it

finally came back (before surgery I was a foreign language

teacher...French and Spanish...that was gone following surgery.  But,

the French came back...not perfect...after about 8 months)  So, with a

6 month speech therapy class, my reading is back...not perfect...and my

memory is not as sharp as it once was.  Am I angry?  You're damn right

I have been angry, depressed, confused,...you name it!  Why me?  I was

a great student in high school...number 9 in the class, went to a great

college...felt like such a strong and independent woman!  And now I am

reliant on everyone else, can't drive, feel weak, memory is not the

sharpest,..and the meds I was one got me even more depressed...and I

was STILL HAVING SEIZURES!!!  Well,  I decided a year and a half ago, I

wanted to see a change!  I took myself off those pills that were

killing me.  You know, going in to see if my LIVER was still Ok. every

few months just didn't seem right to me!  You know, in my opinion, the

BEST doctor in the world is IN ALL OF US...In OUR body!  Let me figure

out this doctor and see what needs to be done.  The first couple of

months off those pills, I think I was SO happy, feeling strong and IN

CONTROL and I didn't have ONE seizure!  So, again, to make a long story

short - what controls our seizures?  Well, that would be our

emotions!   As time went on, as I started getting USED to not having

them, I let small things bother me.  And, well, to make a long story

short, I started having them again.  SO, I read more, and came across a

nice book.

First one:

http://www.amazon.com/Treating-Epilepsy-Naturally-Alternative-Therapies/dp/06580\

13793/ref=sr_1_7?ie=UTF8 & s=books & qid=1232294774 & sr=8-7

Nice, encouraging, natural approach to seizure control.  What a nice, refreshing

outlook. 

NEXT:

http://www.amazon.com/Epilepsy-New-Approach-Adrienne-/dp/0802774652/ref=s\

ip_rech_dp_4

After

reading this and seeing that there was someone who could come and HELP

me with controlling my seizures...and someone who has been through it

HERSELF helped me.  She, just like you, had enceph. herself MANY years

ago and was told by doctors - sorry, there is nothing we can do.  Well,

to get to the point, she taught HERSELF how to control them and it has

now been...what are we up to..30 years!!! Seizure free!  So, I had her

come on over to my home for 4 days to train me how to control them.  Do

I have it PERFECT yet?  No.  But, do I know that at one point, I will

have this DOWN!  You know what makes it hard?  We ALL have emotions.  

We are human!  That is normal and NATURAL.  However, if you have

epilepsy, you have to learn to take it all in stride.  Don't let

emotions get the best of you.  Well, that isn't as easy as it sounds.  BUT, it

is possible.  What makes it easier is the warnings our

brain/body DO give us that things aren't going perfect.  The brain says, in many

ways, " Watch out...a seizure may be coming. "   I NEVER though I had

warnings...that must be what those other lucky people have.  But, not

me.  Over time, I did realize, WOW...that IS a warning.  There is a

long list...I will let you read about this.  But, once you do get to

know yourself and SEE or FEEL the warning,  just BREATHE.  Take DEEP,

RELAXING breaths.  That is it.  When you feel it coming, BREATHE. 

Change the direction of the negative activity of the brain.  Now, I

told you, I don't have it perfect yet.  Here is a recent example.  I am

a massage therapist (damn good!) and I was VERY busy yesterday.  One

client after another.  Well, I needed to go and have lunch.  The

healthy, friendly, open arms, cute Thai restaurant I go to often was

closed.  I was sad, surprised and just decided to go to the other Thai

place.  I had been there once and didn't like it as much.  But, had to

eat and run.  SO, go over, Maureen!  I went in and waited for about 10

minutes to be seated so that didn't start off well.  There was barely

anyone there!  Why so long?  Then to get the menu and for them to help

me...and when they DID come to me, they were annoyed I was there.  So,

to say the least, a lot of negative engery took over in my brain.  And,

a few minutes later, seizure.  Petit mal.  When I came to, I was

frustrated, but looking back, I SHOULD HAVE KNOWN.  Come on!  It is Obvious

I was annoyed!  Why didn't I just BREATHE and let positive take over.  

With breathing, my brain could have looked at this differently.  It

could have turned this around saying, " Maureen, maybe these waitresses

are having a bad day.  Maybe something bad happened to them today. They

are human.  Smile at them and let them enjoy the rest of their day. "   

But, I didn't.  Do you see how something so simple could have turned it

around?  But, I am human and negative took over.  Soon, I WILL grasp

this 100% at some point...but not yet.  =)  

So,

the point of my story is:  Will your life go back to exactly what it

once was?  Probably not.  BUT!  Is that such a bad thing?  What could happen is

A NEW, WONDERFUL,

DIFFERENT!  You COULD control those seizures and help

OTHERS do the same.  Getting this word out is needed.  Not EVERYONE

NEEDS drugs to control their seizures.  BUT, don't just STOP the meds. 

This needs to be well thought out.  Read the books I have sent you. 

Keep a journal. 

If you want to go one step further, have Dr. Donna s come to your home to

work with you.  Here is the info.

http://www.andrewsreiter.com/

If you have any other questions, let me know!  Good luck everyone!

[Guest guest]

-Hi there. Yur describing me almost exactly. I want to thank yu from

the bottom of my heart. I really appreciate this. Wishing yu all the

best by the grace of God...-- In ,

" massagemedicine@... " <napsac2@...> wrote:

>

> Hello,

>

> I had to write to you because I have been in your

> situation for many years and I am finally starting to see the light at

> the end of the tunnel so I thought I would pass it on. 

>

> First, a quick story about me.  When I was around 18 in 1989 I

started having petit mal seizures

> and no one knew why or what brought them on.  Looking back, I remember

> I was getting to the end of my high school years, and one day in

> celebration, me and a bunch of friends went swimming.  And, in the

> pool, I was so excited to be in the pool...swimming so fast, I did a

> flip turn  no knowing there was a seating area in the pool and bumped

> my head.  I walked off, trying not to make a big scene...just let the

> pain go away on its own.  A couple of days later at a graduation party,

> I remember having a few wine coolers...more than normal (that is not a

> lot..but it was to me!) and I had a seizure.  I heard about it the next

> day.  (Looking back and reading more about seizure causes, it could

> have been an acid buildup in the brain...an area of tissue that was

> disrupted and then the acids put in my body made it to the brain..and

> seizures were formed).  Well, at the time I thought it was a one shot

> deal and didn't tell mom and dad.  Well, time went on..a year or two

> and I was going through college and living in France and I noticed they

> were coming back...more often now.  So, I went to a doctor in France

while I was on my study abroad and to make a long story short, I was

told I had epilepsy. 

> I was put on pills and I thought that was it.  I got back to the U.S

> and I was still having them.  At first, I wasn't the best about taking

> the meds religiously...but as time went on, I WAS taking them...all of

> them, like clock work.  And, still having seizures.  SO, in 1995, I had

> brain surgery to help get " rid " of these seizures. Well, what the

> surgery got rid of was my great memory and my ability to read. 

> Following surgery I didn't know anyone's name...I didn't remember the

> states...or even something basic like the word " flower. "   Well, it

> finally came back (before surgery I was a foreign language

> teacher...French and Spanish...that was gone following surgery.  But,

> the French came back...not perfect...after about 8 months)  So, with a

> 6 month speech therapy class, my reading is back...not perfect...and my

> memory is not as sharp as it once was.  Am I angry?  You're damn right

> I have been angry, depressed, confused,...you name it!  Why me?  I was

> a great student in high school...number 9 in the class, went to a great

> college...felt like such a strong and independent woman!  And now I am

> reliant on everyone else, can't drive, feel weak, memory is not the

> sharpest,..and the meds I was one got me even more depressed...and I

> was STILL HAVING SEIZURES!!!  Well,  I decided a year and a half ago, I

> wanted to see a change!  I took myself off those pills that were

> killing me.  You know, going in to see if my LIVER was still Ok. every

> few months just didn't seem right to me!  You know, in my opinion, the

> BEST doctor in the world is IN ALL OF US...In OUR body!  Let me figure

> out this doctor and see what needs to be done.  The first couple of

> months off those pills, I think I was SO happy, feeling strong and IN

> CONTROL and I didn't have ONE seizure!  So, again, to make a long story

> short - what controls our seizures?  Well, that would be our

> emotions!   As time went on, as I started getting USED to not having

> them, I let small things bother me.  And, well, to make a long story

> short, I started having them again.  SO, I read more, and came across a

> nice book.

>

> First one:

>

>

http://www.amazon.com/Treating-Epilepsy-Naturally-Alternative-Therapies/dp/06580\

13793/ref=sr_1_7?ie=UTF8 & s=books & qid=1232294774 & sr=8-7

>

> Nice, encouraging, natural approach to seizure control.  What a

nice, refreshing outlook. 

>

> NEXT:

>

>

http://www.amazon.com/Epilepsy-New-Approach-Adrienne-/dp/0802774652/ref=s\

ip_rech_dp_4

>

> After

> reading this and seeing that there was someone who could come and HELP

> me with controlling my seizures...and someone who has been through it

> HERSELF helped me.  She, just like you, had enceph. herself MANY years

> ago and was told by doctors - sorry, there is nothing we can do.  Well,

> to get to the point, she taught HERSELF how to control them and it has

> now been...what are we up to..30 years!!! Seizure free!  So, I had her

> come on over to my home for 4 days to train me how to control them.  Do

> I have it PERFECT yet?  No.  But, do I know that at one point, I will

> have this DOWN!  You know what makes it hard?  We ALL have emotions.  

> We are human!  That is normal and NATURAL.  However, if you have

> epilepsy, you have to learn to take it all in stride.  Don't let

> emotions get the best of you.  Well, that isn't as easy as it

sounds.  BUT, it is possible.  What makes it easier is the warnings our

> brain/body DO give us that things aren't going perfect.  The brain

says, in many ways, " Watch out...a seizure may be coming. "   I NEVER

though I had

> warnings...that must be what those other lucky people have.  But, not

> me.  Over time, I did realize, WOW...that IS a warning.  There is a

> long list...I will let you read about this.  But, once you do get to

> know yourself and SEE or FEEL the warning,  just BREATHE.  Take DEEP,

> RELAXING breaths.  That is it.  When you feel it coming, BREATHE. 

> Change the direction of the negative activity of the brain.  Now, I

> told you, I don't have it perfect yet.  Here is a recent example.  I am

> a massage therapist (damn good!) and I was VERY busy yesterday.  One

> client after another.  Well, I needed to go and have lunch.  The

> healthy, friendly, open arms, cute Thai restaurant I go to often was

> closed.  I was sad, surprised and just decided to go to the other Thai

> place.  I had been there once and didn't like it as much.  But, had to

> eat and run.  SO, go over, Maureen!  I went in and waited for about 10

> minutes to be seated so that didn't start off well.  There was barely

> anyone there!  Why so long?  Then to get the menu and for them to help

> me...and when they DID come to me, they were annoyed I was there.  So,

> to say the least, a lot of negative engery took over in my brain.  And,

> a few minutes later, seizure.  Petit mal.  When I came to, I was

> frustrated, but looking back, I SHOULD HAVE KNOWN.  Come on!  It is

Obvious

> I was annoyed!  Why didn't I just BREATHE and let positive take over.  

> With breathing, my brain could have looked at this differently.  It

> could have turned this around saying, " Maureen, maybe these waitresses

> are having a bad day.  Maybe something bad happened to them today. They

> are human.  Smile at them and let them enjoy the rest of their day. "   

> But, I didn't.  Do you see how something so simple could have turned it

> around?  But, I am human and negative took over.  Soon, I WILL grasp

> this 100% at some point...but not yet.  =)  

>

> So,

> the point of my story is:  Will your life go back to exactly what it

> once was?  Probably not.  BUT!  Is that such a bad thing?  What

could happen is A NEW, WONDERFUL,

> DIFFERENT!  You COULD control those seizures and help

> OTHERS do the same.  Getting this word out is needed.  Not EVERYONE

> NEEDS drugs to control their seizures.  BUT, don't just STOP the meds. 

> This needs to be well thought out.  Read the books I have sent you. 

> Keep a journal. 

>

> If you want to go one step further, have Dr. Donna s come to

your home to work with you.  Here is the info.

>

> http://www.andrewsreiter.com/

>

> If you have any other questions, let me know!  Good luck everyone!

>

>

>

>

>

>

[Guest guest]

-Hi folks. I suggest yu try msm powder. Seems to work for

me....-- In , " Dawn "

<morganna713@...> wrote:

>

> I'm very sorry that you feel so badly. I don't have ep, my ten year

> old does. I often wonder how life will be for her. She seems to be

> pretty well off for the most part but she's still young and I have no

> idea how this will affect her life with driving, etc, someday.

>

> My heart goes out to you although I have no practical advice.

>

>

>

> >

> > >

> >

> > > > I have 2 boys with autism, the oldest is 9. He has

> uncontrollable

> >

> > > > seizures and has had this

> >

> > > > condition since he was 2! We are afraid that we may lose him if

> we

> >

> > > > don't gain control over

> >

> > > > these crippling seizures! He has tried 10 anticonvulsants that

> >

> > > > don't work. He is currently

> >

> > > > taking Ativan and has for the last 2 years, and he is still

> having

> >

> > > > seizures...but Ativan is

> >

> > > > such an addictive drug that if we even try to wean him off of

> it,

> >

> > > > he goes into seizures.

> >

> > > >

> >

> > > > So...our options are Neurofeedback? Ketogenic diet? What should

> we

> >

> > > > do? Does anyone

> >

> > > > have any ideas? He is so beautiful... this is just devastating!

> How

> >

> > > > can we go on like this?

> >

> > > > Then everyone who knows us has to call and say, " did you hear

> what

> >

> > > > happened to

> >

> > > > Travolta's son? " Yes, we heard and we have been living this

> >

> > > > nightmare for the last 7

> >

> > > > years!!

> >

> > > >

> >

> > > > We would like to get him involved with the MIND Institute, but

> they

> >

> > > > have refused our

> >

> > > > inquiry because they are booked with kids, supposedly.

> >

> > > >

> >

> > > > Does anyone have a contact for a Neurofeedback specialist in

> the

> >

> > > > central California region

> >

> > > > around Sacramento or Stockton area? Will this even work? More

> $$

> >

> > > > down the drain?

> >

> > > >

> >

> > > > We bought a $25,000 hyperbaric oxygen chamber, thinking that

> would

> >

> > > > help. I have done

> >

> > > > about 120 dives and still his seizures are prevalent.

> >

> > > >

> >

> > > > Any ideas would help!

> >

> > > >

> >

> > > > Thank you! Rhonda

> >

> > > >

> >

> > > >

> >

> > > >

> >

> > > I had uncontrollable seizures for many years. Doctors were

> unable to locate any meds

> >

> > that were effective in controlling the seizures. Finally I found

> that a side effect of my

> >

> > meds was that the magnesium in my body was too low. I started

> taking magnesium, and

> >

> > found immediate improvement, but the seizures continued to occur.

> The problem was

> >

> > still the magnesium. I determined that the magnesium levels in my

> body were very low,

> >

> > and almost every day that I added magnesium, the amount remaining

> in my system was

> >

> > gone every day. It is very important to measure your magnesium

> levels, because every

> >

> > time my levels were too low, a seizure would occur. Check your

> Vitamin D levels. Vitamin

> >

> > D is needed to process Calcium, which will have an effect on the

> magnesium.

> >

> > >

> >

> > >

> >

> > >