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

[Guest guest]

i can't take this seizure crap anymore. i hate being who i am. i can't work b/c

i will get sick.  i am stuck it seems. does anyone feel like this? i am

miserable. i pray they find a treatment so we can live normal lives without

limitations. this sucks.

From: c_paietta <c_paietta@...>

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

Date: Saturday, January 10, 2009, 2:55 PM

>

> > 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]

Robin:

look into chelation for heavy metals

this has worked for some people  also read about

triggers for seizures and allergies

Dairy products, caffeine, additives, food colorings

very spicy, sweet, salty foods, alcohol. 

Stay away from computer screens, large tv screens

dehydration, lack of sleep.  Eat foods hi on B´s

a good multivitamin, magnesium.

check the posibility of hormonal inbalances progesterone.

First elim

________________________________

From: Robin W. Hendricks <robinwool@...>

Sent: Saturday, January 10, 2009 11:30:15 PM

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

i can't take this seizure crap anymore. i hate being who i am. i can't work b/c

i will get sick.  i am stuck it seems. does anyone feel like this? i am

miserable. i pray they find a treatment so we can live normal lives without

limitations. this sucks.

From: c_paietta <c_paietta (DOT) com>

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

Date: Saturday, January 10, 2009, 2:55 PM

>

> > 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]

Dawn

I hear your words, everything is so much and what makes everything so bad is

most of us fear. We live, breath, eat, sleep in fear. Our limitations are only

what our mind can perceive at that given moment in time. If we don't have a

seizure day and feel good our limitations are less, if we do our limitations are

more.

I have seizures too, I take Neurotin 3x day for them. I work as Personal

Assistant/House Manager/Nanny and I have hidden them for 9.5 years. I take one

day and see if I can get through that one. I also have Lupus in my lungs so with

my seizures my lungs freeze up and I stare at the ceiling wondering if I will

breath again. I'm 32 years old and no children but I am engaged and surprisingly

I found someone. But there is hope even though I have not cured my seizures with

homeopathic's. I have healed my hypoglycemia, psoriaisis, fatigue, brain fog,

pain down to a 3 used to be an 8 and so much more. I think its due to that I

work a laborous job why I still have pain. I do believe the healing of my

seizures will be in time and it will happen. The body wants to be healed it

really does. Someone to pay attention to is Dr. Mercola, he has a website and a

lot of really awesome information!

I am also deep into Deepak Chopra, The Celestine Prophecy, and internally

finding the inner wisdom. I listen to a lot of Enya, Enigma and music that makes

me feel energetically whole. I eat as much raw food as possible and I do not use

the microwave. I also found why I am here and I am doing that. I am poor so I

find all my information on the internet or at the library. I use a lot of

library books for information.

I feel if I feed myself not just best food I can afford(not all the best food is

expensive, like lentils), but take time to relax and learn, continously learn I

feel better and my limitations seem a lot less. When you are researching don't

just stop at one place keep going further and further.....the answers are

everywhere.

" Namaste "

Tia

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

________________________________

From: Dawn <morganna713@...>

Sent: Sunday, January 11, 2009 6:59:38 AM

Subject: [ ] Re: 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

>

> > >

>

> > >

>

> > >

>

> > 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, I am a mom to a son with seizures. I cannot imagine how difficult life must

be for you. It is unacceptable that you have to continue on like this. After

nearly 5 yrs of dealing with seizures I am still shocked at the fact that there

is bascially no treatment. WHAT HAS THE EPILEPSY FOUNDATION BEEN DOING ALL THESE

YEARS????????? ARe they just a fron for Pharma? It seems like so many of these

organizations are just that.

From: Tia Royer <tiaroyer@...>

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

Date: Sunday, January 11, 2009, 3:24 PM

Dawn

I hear your words, everything is so much and what makes everything so bad is

most of us fear. We live, breath, eat, sleep in fear. Our limitations are only

what our mind can perceive at that given moment in time. If we don't have a

seizure day and feel good our limitations are less, if we do our limitations are

more.

I have seizures too, I take Neurotin 3x day for them. I work as Personal

Assistant/House Manager/Nanny and I have hidden them for 9.5 years. I take one

day and see if I can get through that one. I also have Lupus in my lungs so with

my seizures my lungs freeze up and I stare at the ceiling wondering if I will

breath again. I'm 32 years old and no children but I am engaged and surprisingly

I found someone. But there is hope even though I have not cured my seizures with

homeopathic' s. I have healed my hypoglycemia, psoriaisis, fatigue, brain fog,

pain down to a 3 used to be an 8 and so much more. I think its due to that I

work a laborous job why I still have pain. I do believe the healing of my

seizures will be in time and it will happen. The body wants to be healed it

really does. Someone to pay attention to is Dr. Mercola, he has a website and a

lot of really awesome information!

I am also deep into Deepak Chopra, The Celestine Prophecy, and internally

finding the inner wisdom. I listen to a lot of Enya, Enigma and music that makes

me feel energetically whole. I eat as much raw food as possible and I do not use

the microwave. I also found why I am here and I am doing that. I am poor so I

find all my information on the internet or at the library. I use a lot of

library books for information.

I feel if I feed myself not just best food I can afford(not all the best food is

expensive, like lentils), but take time to relax and learn, continously learn I

feel better and my limitations seem a lot less. When you are researching don't

just stop at one place keep going further and further..... the answers are

everywhere.

" Namaste "

Tia

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

____________ _________ _________ __

From: Dawn <morganna713>

Sent: Sunday, January 11, 2009 6:59:38 AM

Subject: [ ] Re: 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

>

> > >

>

> > >

>

> > >

>

> > 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 WONDER IF THEY WILL EVER HAVE SOMETHING FOR PEOPLE WHOM SHACK DURING A

SEIZURE. I KNOW I AM PRAYING FOR A CURE. I AM SURE ALL OF Y'ALL ARE.

From: Tia Royer <tiaroyer@...>

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

Date: Sunday, January 11, 2009, 2:24 PM

Dawn

I hear your words, everything is so much and what makes everything so bad is

most of us fear. We live, breath, eat, sleep in fear. Our limitations are only

what our mind can perceive at that given moment in time. If we don't have a

seizure day and feel good our limitations are less, if we do our limitations are

more.

I have seizures too, I take Neurotin 3x day for them. I work as Personal

Assistant/House Manager/Nanny and I have hidden them for 9.5 years. I take one

day and see if I can get through that one. I also have Lupus in my lungs so with

my seizures my lungs freeze up and I stare at the ceiling wondering if I will

breath again. I'm 32 years old and no children but I am engaged and surprisingly

I found someone. But there is hope even though I have not cured my seizures with

homeopathic' s. I have healed my hypoglycemia, psoriaisis, fatigue, brain fog,

pain down to a 3 used to be an 8 and so much more. I think its due to that I

work a laborous job why I still have pain. I do believe the healing of my

seizures will be in time and it will happen. The body wants to be healed it

really does. Someone to pay attention to is Dr. Mercola, he has a website and a

lot of really awesome information!

I am also deep into Deepak Chopra, The Celestine Prophecy, and internally

finding the inner wisdom. I listen to a lot of Enya, Enigma and music that makes

me feel energetically whole. I eat as much raw food as possible and I do not use

the microwave. I also found why I am here and I am doing that. I am poor so I

find all my information on the internet or at the library. I use a lot of

library books for information.

I feel if I feed myself not just best food I can afford(not all the best food is

expensive, like lentils), but take time to relax and learn, continously learn I

feel better and my limitations seem a lot less. When you are researching don't

just stop at one place keep going further and further..... the answers are

everywhere.

" Namaste "

Tia

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

____________ _________ _________ __

From: Dawn <morganna713>

Sent: Sunday, January 11, 2009 6:59:38 AM

Subject: [ ] Re: 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

>

> > >

>

> > >

>

> > >

>

> > 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 started really low an slow with eveything. I started the Taurine

first. Let me know what happens.

On Jan 15, 2009, at 7:38 PM, allen_franc wrote:

> 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]

thanks!! its all fine. i am just weird like that.

allen_franc <mykdymond@...> wrote: 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]

Dr. Barry Sterman from UCLA is an expert in the area of neurofeedback. He

retired already from UCLA but I think he is still active. He possible know

someone at your area.

CY

> 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]

thanks! does anyone know a jobs online i can do. i can't really work, and they

won't give me disability.

thanks!

C Fu <cyfcais@...> wrote: Dr. Barry Sterman

from UCLA is an expert in the area of neurofeedback. He retired already from

UCLA but I think he is still active. He possible know someone at your area.

CY

> 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]

Yes, it's true that this kind of life sucks. I've been an epileptic for 21 years

since I was stung by a mosquito carrying the encephalitis virus. It happened the

day I moved into the day I had just purchased and moved into. I was fell into a

coma and was in that coma for three weeks with my family not knowing if I'd

survive.

Since that day, my life changed dramatically for the worse. I was an

award-winning sportswriter at the time and I was forced to give up my job

because of my constant seizures and loss of memory. I was forced to sell my

house and the friends I had gradually strayed as time went on.

Members of my family tell me, " Just thank God you're still alive and that you

can still do certain things. There are people who don't have people around them

and in much worse condition than you are " . Don't misunderstand, I realize all

that and I am fortunate to some degree. But realizing that there, " are other

people in much worse condition than I am " is absolutely no consolation to me. In

fact, it pisses me off!

It's like telling a Vietnam vet who came back from the war with one arm, " Just

be grateful that you have the other arm. There are some vets who don't have both

or have lost their eyesight " Well gee, maybe if they had lost both arms or their

sight along with having to wear a prosthetic, that would give them a license to

bitch?

My life sucks. I've been a homebody since being stuck with this shit. I can't

drive and I have members of my family that adore me. They adore me so much so

that they're so afraid that I'll have a seizure, they won't let me go to the

corner store unattended. What kind of life is that? It's horrible.

So any epileptic that says " they're miserable and hates their life " , I

understand completely why they say it. They say it out of frustration because of

what they had and have lost. They don't say it out of a blatant disrespect to

God or whoever they worship. People from the outside looking in are incapable of

realizing this.

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

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]

I KNOW HOW YOU FEEL FOR SURE. A LITTLE BOY PUSHED ME OFF THE MONKEY BARS WHEN I

WAS IN SECOND GRADE, AND I HIT MY HEAD AND WENT INTO A COMA AS WELL. I GOT A

CHANCE TO GO TO NURSING SCHOOL YEARS AGO, AND MY BODY COULD N 'T HANDLE IT. I AM

TRYING TO BE STRONG BUT ITS SO HARD. MY HUSBAND WORKS AND IT SEEMS LIKE I AM

ALWAYS SICK. A LITTLE OVER 2 YEARS AGO, MY HUSBAND AND I WERE TALKING ABOUT

HAVING A BABY. I WENT TO THIS SPECIALIST, AND HIS ASSOCIATE MESSED MY DOSAGE OF

MY MEDICATION. I HAD A SEIZURE AND MY HAND WENT INTO THE GREASE POT. I LOST

PARTS OF MY 2 FINGERS, AND HAD FOR GRAPHS. I AM TRYING TO GET MY SCARS DOWN. I

HAVEN'T WORKED IN A WHILE.I HAVE GOTTEN SOME DOWN THOUGH. I THINK I TAKE MORE

PILLS THEN MY GRANDMAW. I TAKE TONS OF EXTRA SUPPLEMENTS WITH MY MEDICATION TO

HELP ME. I JUST WISH IT WOULD GO AWAY. I TAKE MELATONIN TO HELP ME WITH MY

ANXIETY, AND BLOOD PRESSURE AND TO ALSO HELP ME SLEEP. IT HELPS ME WITH NO

MEDICAL SIDE EFFECTS. IT ALSO HELPS MY SPELLS SO I

WON'T HAVE A SEIZURE. (OF COURSE YOU NEED TO REST AND STUFF WITH IT SOMETIMES)

MAYBE IT COULD HELP YOU

pharl <pharley1@...> wrote: Yes, it's true that

this kind of life sucks. I've been an epileptic for 21 years since I was stung

by a mosquito carrying the encephalitis virus. It happened the day I moved into

the day I had just purchased and moved into. I was fell into a coma and was in

that coma for three weeks with my family not knowing if I'd survive.

Since that day, my life changed dramatically for the worse. I was an

award-winning sportswriter at the time and I was forced to give up my job

because of my constant seizures and loss of memory. I was forced to sell my

house and the friends I had gradually strayed as time went on.

Members of my family tell me, " Just thank God you're still alive and that you

can still do certain things. There are people who don't have people around them

and in much worse condition than you are " . Don't misunderstand, I realize all

that and I am fortunate to some degree. But realizing that there, " are other

people in much worse condition than I am " is absolutely no consolation to me. In

fact, it pisses me off!

It's like telling a Vietnam vet who came back from the war with one arm, " Just

be grateful that you have the other arm. There are some vets who don't have both

or have lost their eyesight " Well gee, maybe if they had lost both arms or their

sight along with having to wear a prosthetic, that would give them a license to

bitch?

My life sucks. I've been a homebody since being stuck with this shit. I can't

drive and I have members of my family that adore me. They adore me so much so

that they're so afraid that I'll have a seizure, they won't let me go to the

corner store unattended. What kind of life is that? It's horrible.

So any epileptic that says " they're miserable and hates their life " , I

understand completely why they say it. They say it out of frustration because of

what they had and have lost. They don't say it out of a blatant disrespect to

God or whoever they worship. People from the outside looking in are incapable of

realizing this.

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

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]

VERY WELL SAID!!!

 

I too, SO agree its " mind over matter " . I have a 12 year old that has daily

seizures. She has been seizing since she was 18 months. Needless to say, these

seizures have severely affected cognition. She is not able to do alot of things

herself. I dont think she is able to understand or produce a way to give herself

that much power over her own brain. The funny part is, upon my relentless search

for a cure, I came across Dr. s site, myself. From that, I took a to

a clinic for biofeedback, and due to her limited cognitive abilities, they said

she was not a candidate for thier treatment. So...I took matters into my own

hands. From that point on, I talked a through her seizures. I told her,

think hard, breath, and make those bad seizures go away. And, low and behold, I

am now able to break her from seizures! She still does have daily seizures, but

they are now MUCH shorter, and her postictal state is much better. I believe the

mind can heal

anything wrong with the entire body. You just have to have faith it will work!

Good luck to everyone still suffering! Its a long road, but one day there will

be an answere for all!

 

From: massagemedicine@... <napsac2@...>

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

Date: Sunday, January 18, 2009, 12:36 PM

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/0658013793/ 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=sip_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.andrewsr eiter.com/

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

[Guest guest]

Ativan is horrible.

You might want to try the ketogenic diet.

And you might want to try marijuana.

I know there is a stigma attached to it, but it is a very safe drug that has

been used for centuries to fight epilepsy.

Please check out my web site.

Alternative Epilepsy Treatments

http://epilepsyalternatives.freeservers.com

> >

> > 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.

> > >

> > > >

> > >

> > > >

> > >

> > > > [Non-text portions of this message have been

> removed]

> > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> >

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Please tell me that I am not seeing in print that using an illegal drug is

safe......

 

I'll talk to my neurologist about it, however.     In the meantime - I'll stick

with Tegretol!  It's working!!!!!!!!

> >

> > 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.

> > >

> > > >

> > >

> > > >

> > >

> > > > [Non-text portions of this message have been

> removed]

> > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> >

>

>

>

>

> ------------ --------- --------- ------

>

>