Re: Chelating with a Seizure Disorder

[Guest guest]

My 15-year old son developed seizures 2 years ago. We have had them

controlled with Depakote for about a year and a half now. We started chelation

a

year ago and haven't had any problems, but his seizures were pretty well

controlled before we started. He's doing DMPS and ALA on Andy's protocol. I

wish

you the best of luck!!!

Carla

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[Guest guest]

I wonder what if any drug reactions there may be

between the seizure med and DMSA.

--- rednews5 <rednews@...> wrote:

> I have a teen daughter who has been having seizures

> for almost 2 yrs.

> She currently isn't on AEDs but she is taking quite

> a few vitamins and

> minerals. I have been told by Andy that she is

> mercury toxic, so I

> have been reading up on his protocol as well as

> others to get an idea

> of what I am in for. She is currently doing

> neurofeedback. I am told

> that this will not interfere.

>

> I can't seem to find any information or guidelines

> to help me with my

> concerns about increased seizures during chelation.

>

> Do you think I should wait until summer so that I

> don't have any

> questions from the school?

>

> I will be doing this by myself and without a doctors

> approval. I will

> need the support of this group.

>

> My order is in for Andy's book.

>

>

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

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[Guest guest]

I personally have chelated w/ Natural Cellular Defense liquid

zeolites, which happens to remove Mercury from the cirulatory system

before anything else, and I have stopped having seizures .... after

having them for over 25 years. I am also off of all seizure

medication and my brain scan (EEG) results upgraded.

, BS.HT

Board Certified Holistic Practitioner

www.SignificantHealing.com

www.ZeoliteExpert.com

>

> I have a teen daughter who has been having seizures for almost 2

yrs.

> She currently isn't on AEDs but she is taking quite a few vitamins

and

> minerals. I have been told by Andy that she is mercury toxic, so I

> have been reading up on his protocol as well as others to get an

idea

> of what I am in for. She is currently doing neurofeedback. I am told

> that this will not interfere.

>

> I can't seem to find any information or guidelines to help me with

my

> concerns about increased seizures during chelation.

>

> Do you think I should wait until summer so that I don't have any

> questions from the school?

>

> I will be doing this by myself and without a doctors approval. I

will

> need the support of this group.

>

> My order is in for Andy's book.

>

[Guest guest]

In a message dated 4/4/2008 5:44:32 P.M. Pacific Daylight Time,

rednews@... writes:

Thank you Carla.

I was considering only doing ALA on Andy's protocol.

Supported by natural vitamins and minerals.

Though as she is doing neurofeedback, I also have just considered

beginning DMSA to begin with until we know for sure what the positives

and or negatives are to the NF. I thought from what I have read

though, that Andy does not recommend DMPS. I am new to all of this so

I could be very wrong. I continue to read, so that I do know what I am

doing.

Robin

I think the DMSA is better for lead, not sure if that's the only reason. I

think the majority use DMSA more than the DMPS. I may switch over

eventually. Andy actually suggested doing the DMPS for my son, but I think

DMSA was an

alternative, too. (Also, I think you need a prescription for DMPS and not

for DMSA.) We've had no problems. I was a little worried when I added the

ALA since that crosses the blood/brain barrier...if it would cause seizure

activity. I haven't seen any problems with anything and it's been almost a

year.

(We're also doing all the supplements, too. I think his seizures are

pretty well stabilized with the Depakote.) I wish you the best with

everything...

Carla

**************Planning your summer road trip? Check out AOL Travel Guides.

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[Guest guest]

She is not on any seizure meds at this time.

Only vitamin and mineral supplements.

Seizures have been reduced.

>

> > I have a teen daughter who has been having seizures

> > for almost 2 yrs.

> > She currently isn't on AEDs but she is taking quite

> > a few vitamins and

> > minerals. I have been told by Andy that she is

> > mercury toxic, so I

> > have been reading up on his protocol as well as

> > others to get an idea

> > of what I am in for. She is currently doing

> > neurofeedback. I am told

> > that this will not interfere.

> >

> > I can't seem to find any information or guidelines

> > to help me with my

> > concerns about increased seizures during chelation.

> >

> > Do you think I should wait until summer so that I

> > don't have any

> > questions from the school?

> >

> > I will be doing this by myself and without a doctors

> > approval. I will

> > need the support of this group.

> >

> > My order is in for Andy's book.

> >

> >

>

>

>

>

________________________________________________________________________________\

____

> You rock. That's why Blockbuster's offering you one month of

Blockbuster Total Access, No Cost.

> http://tc.deals./tc/blockbuster/text5.com

>

[Guest guest]

Thank you Carla.

I was considering only doing ALA on Andy's protocol.

Supported by natural vitamins and minerals.

Though as she is doing neurofeedback, I also have just considered

beginning DMSA to begin with until we know for sure what the positives

and or negatives are to the NF. I thought from what I have read

though, that Andy does not recommend DMPS. I am new to all of this so

I could be very wrong. I continue to read, so that I do know what I am

doing.

Robin

>

> My 15-year old son developed seizures 2 years ago. We have had them

> controlled with Depakote for about a year and a half now. We

started chelation a

> year ago and haven't had any problems, but his seizures were pretty

well

> controlled before we started. He's doing DMPS and ALA on Andy's

protocol. I wish

> you the best of luck!!!

>

>

> Carla

>

>

>

> **************Planning your summer road trip? Check out AOL Travel

Guides.

>

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

>

>

>

[Guest guest]

In a message dated 4/4/2008 9:38:13 P.M. Pacific Daylight Time,

mercury@... writes:

Carla.

I know very little about this subject, but I have read something about the

ketogenic diet. I'm curious, is this something you've tried? Besides seeing

Andy mentioning it, I haven't seen a lot of discussion about it on this board,

so I'm curious.

Dave.

I haven't tried that yet. I had him on GF/CF diet for a year, but he seemed

to be one of the kids that didn't benefit from the diet. I had mentioned

the ketogenic diet to his neurologist, but I was more concerned about getting

his seizures under control as soon as possible so I opted for the Depakote.

This pretty much stopped them. That's when I felt more comfortable starting

chelation b/c he hadn't had a seizure in over 6 months by the time we started.

Andy did suggest trying the ketogenic diet, but said not to be afraid to

use the prescribed medication to get the seizures controlled. I may try the

diet in the future to see if we can scale back the depakote, but probably not

until we are done chelating.

I will say that it's been about a year and I didn't see a whole lot of

progress the last 6 or 7 months. We just added L-Carnetine that his

neurologist

prescribed b/c he had a high lactate level and all of a sudden I'm seeing a

whole lot of progress and change in behaviors for the better!! I don't know if

it's due to the L-Carnetine or the stall period in the chelation, but

whatever it is, I'm hoping it will continue!!!

Carla

**************Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Carla.

I know very little about this subject, but I have read something about the

ketogenic diet. I'm curious, is this something you've tried? Besides seeing

Andy mentioning it, I haven't seen a lot of discussion about it on this board,

so I'm curious.

Dave.

-------------

Posted by: " carla925@... " carla925@... cdemaci

Date: Thu Apr 3, 2008 10:26 pm ((PDT))

My 15-year old son developed seizures 2 years ago. We have had them

controlled with Depakote for about a year and a half now. We started chelation

a

year ago and haven't had any problems, but his seizures were pretty well

controlled before we started. He's doing DMPS and ALA on Andy's protocol. I

wish

you the best of luck!!!

Carla

[Guest guest]

You might contact Doctor at www.dogtorj.com

he is truly a light at the end of the tunnel on this subject.

He tells me he has some new info to share with the E community soon.

Did you consider cutting out soy and corn too?

Or did you get a food sensitivity test?

Are you positive that the diet was pure?

Have you looked at www.stankurtz.com for his approach to diet?

>

>

>

> In a message dated 4/4/2008 9:38:13 P.M. Pacific Daylight Time,

> mercury@... writes:

>

> Carla.

>

> I know very little about this subject, but I have read something

about the

> ketogenic diet. I'm curious, is this something you've tried?

Besides seeing

> Andy mentioning it, I haven't seen a lot of discussion about it on

this board,

> so I'm curious.

>

> Dave.

>

>

> I haven't tried that yet. I had him on GF/CF diet for a year, but

he seemed

> to be one of the kids that didn't benefit from the diet. I had

mentioned

> the ketogenic diet to his neurologist, but I was more concerned

about getting

> his seizures under control as soon as possible so I opted for the

Depakote.

> This pretty much stopped them. That's when I felt more comfortable

starting

> chelation b/c he hadn't had a seizure in over 6 months by the time

we started.

> Andy did suggest trying the ketogenic diet, but said not to be

afraid to

> use the prescribed medication to get the seizures controlled. I

may try the

> diet in the future to see if we can scale back the depakote, but

probably not

> until we are done chelating.

>

> I will say that it's been about a year and I didn't see a whole lot of

> progress the last 6 or 7 months. We just added L-Carnetine that his

neurologist

> prescribed b/c he had a high lactate level and all of a sudden I'm

seeing a

> whole lot of progress and change in behaviors for the better!! I

don't know if

> it's due to the L-Carnetine or the stall period in the chelation, but

> whatever it is, I'm hoping it will continue!!!

>

>

> Carla

>

>

>

>

> **************Planning your summer road trip? Check out AOL Travel

Guides.

>

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

>

>

>

[Guest guest]

> I will say that it's been about a year and I didn't see a whole lot of

> progress the last 6 or 7 months. We just added L-Carnetine that his

neurologist

> prescribed b/c he had a high lactate level and all of a sudden I'm

seeing a

> whole lot of progress and change in behaviors for the better!!

At my house, carnitine was one of the " miracle " supps. My kids needed

carnitine for proper absorption of fats, B12, TMG, folic acid, and

vitamin C.

Dana

[Guest guest]

Dave,

http://www.neuro.jhmi.edu/epilepsy/keto.html

Keto is not for everyone. It is a VERY strict high

protein, no carb, heavy fat diet. We were told it may

stunt growth and could cause heart problems.

Hospitalization often is required to get started. We

were willing to do the diet if it meant NOT having to

use meds on our then 3 yr old son. In the end, his

seizures did not qualify him for the diet. Hope the

site helps,

--- Dave - AM & FDC Posts <mercury@...> wrote:

> Carla.

>

> I know very little about this subject, but I have

> read something about the ketogenic diet. I'm

> curious, is this something you've tried? Besides

> seeing Andy mentioning it, I haven't seen a lot of

> discussion about it on this board, so I'm curious.

>

> Dave.

>

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

> Posted by: " carla925@... " carla925@...

> cdemaci

> Date: Thu Apr 3, 2008 10:26 pm ((PDT))

>

> My 15-year old son developed seizures 2 years ago.

> We have had them

> controlled with Depakote for about a year and a half

> now. We started chelation a

> year ago and haven't had any problems, but his

> seizures were pretty well

> controlled before we started. He's doing DMPS and

> ALA on Andy's protocol. I wish

> you the best of luck!!!

>

>

> Carla

>

>

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals./tc/blockbuster/text5.com

[Guest guest]

I doubt I said she is mercury TOXIC since I don't have a health care license and

that could

be construed as a diagnostic term - we don't actually have free speech in the US

(something else the media doesn't report on) and I'm not allowed to express such

opinions

without a license.

I probably said she has a high probability of having problems with mercury and a

more

normal healthy state of affairs could be promoted by promoting normal healthy

excretion

of mercury.

I think this would be unwise to try without her on an antiseizure medication if

one can be

found she tolerates.

Andy

> She is not on any seizure meds at this time.

> Only vitamin and mineral supplements.

> Seizures have been reduced.

>

>

>

> >

> > > I have a teen daughter who has been having seizures

> > > for almost 2 yrs.

> > > She currently isn't on AEDs but she is taking quite

> > > a few vitamins and

> > > minerals. I have been told by Andy that she is

> > > mercury toxic, so I

> > > have been reading up on his protocol as well as

> > > others to get an idea

> > > of what I am in for. She is currently doing

> > > neurofeedback. I am told

> > > that this will not interfere.

> > >

> > > I can't seem to find any information or guidelines

> > > to help me with my

> > > concerns about increased seizures during chelation.

> > >

> > > Do you think I should wait until summer so that I

> > > don't have any

> > > questions from the school?

> > >

> > > I will be doing this by myself and without a doctors

> > > approval. I will

> > > need the support of this group.

> > >

> > > My order is in for Andy's book.

> > >

> > >

> >

> >

> >

> >

>

________________________________________________________________________________\

____

> > You rock. That's why Blockbuster's offering you one month of

> Blockbuster Total Access, No Cost.

> > http://tc.deals./tc/blockbuster/text5.com

> >

>

[Guest guest]

I apologize... I should have gone to find the correct quote. You are

right you did NOT say this.

***Robin -

If mercury is 0, and she's accumulating antimony and tin, then you

probably don't need the counting rules. She's toxic.

For the antimony, search on the list about how to reduce exposure. If I

remember, Andy has suggested washing clothes in borax a couple of times. I

think the same was suggested for sheets. Or, see if you can find organic

non-flame-retardant sheets and cloths.

Dave.

I do not plan on putting her back on any anti seizure meds at this

time. So what I understand is that you would not suggest chelating

then if there is still a chance of occasional seizures?

Robin

>

> I doubt I said she is mercury TOXIC since I don't have a health care

license and that could

> be construed as a diagnostic term - we don't actually have free

speech in the US

> (something else the media doesn't report on) and I'm not allowed to

express such opinions

> without a license.

>

> I probably said she has a high probability of having problems with

mercury and a more normal healthy state of affairs could be promoted

by promoting normal healthy excretion of mercury.

>

> I think this would be unwise to try without her on an antiseizure

medication if one can be found she tolerates.

>

> Andy

>

[Guest guest]

> I do not plan on putting her back on any anti seizure meds at this

> time. So what I understand is that you would not suggest chelating

> then if there is still a chance of occasional seizures?

You might try carefully. Maybe you'll be able to do it. I thnk it would be

much wiser to

put her on a seizure med if there are any problems that suggest a need for it

and only

leave her of them if things clearly are fine.

I do not think you are acting in your child's best interest if you will not put

her on a

seizure medication and then can't chelate her. What is your issue with the

seizure

medications? Did I miss something or forget some earlier discussion?

Andy

[Guest guest]

We tried four AEDs with terrible results, and side effects.

Tegretol XR, Gabapentin, Lamictal, Trileptal

I believe the seizures were increased on a few. She has had fewer

seizures since being off all prescription drugs. She takes an increase

in many vitamins and minerals at this time. For the catamenial

seizures she is using a bio-identical hormone. In addition she is

Gluten free, Casein free, Soy free, and Corn free. Preservative free

as well.

I am sorry that you feel I am not acting in her best interest, as I

have spent the last two years researching her needs. I have had little

if no help from our traditional doctors.

There is the fact that after two AEDs the % control that the next meds

will be helpful is less with each trial. The quality of life for a

young lady has been horrific on the meds. I feel I finally have my

daughter back, and the seizures are being reduced.

We are doing a trial of neurofeedback, but I was hopeful to try

chelation on her, as her tests seem to some to be high. Perhaps that

is not something that I can consider, until we raise her seizure

threshold.

>

> > I do not plan on putting her back on any anti seizure meds at this

> > time. So what I understand is that you would not suggest chelating

> > then if there is still a chance of occasional seizures?

>

> You might try carefully. Maybe you'll be able to do it. I thnk it

would be much wiser to

> put her on a seizure med if there are any problems that suggest a

need for it and only

> leave her of them if things clearly are fine.

>

> I do not think you are acting in your child's best interest if you

will not put her on a

> seizure medication and then can't chelate her. What is your issue

with the seizure

> medications? Did I miss something or forget some earlier discussion?

>

> Andy

>

[Guest guest]

Carla - I'm really glad he's making progress!

I'll mention, in case you want to consider the diet earlier, that some

literature I was reading from a guy at s Hopkins who has been looking into

the ketogenic diet recently, indicates that once on it for a period of time (I'd

have to check for how long), some 25% of kids can return to a normal diet and be

seizure free. Others have to go on the diet for a period of time every year,

but can eat regular diet the rest of the year. Apparently the idea of all this

came from some very old lore about how fasting once a year can control seizures.

It's so old that I'm told it's even mentioned in the bible. The medical idea of

a high fat, adequate protein, minimal carbohydrate diet was to mimic a fast.

Dave.

--------------------

Posted by: " carla925@... " carla925@... cdemaci

Date: Fri Apr 4, 2008 10:20 pm ((PDT))

In a message dated 4/4/2008 9:38:13 P.M. Pacific Daylight Time,

mercury@... writes:

Carla.

I know very little about this subject, but I have read something about the

ketogenic diet. I'm curious, is this something you've tried? Besides seeing

Andy mentioning it, I haven't seen a lot of discussion about it on this board,

so I'm curious.

Dave.

I haven't tried that yet. I had him on GF/CF diet for a year, but he seemed

to be one of the kids that didn't benefit from the diet. I had mentioned

the ketogenic diet to his neurologist, but I was more concerned about getting

his seizures under control as soon as possible so I opted for the Depakote.

This pretty much stopped them. That's when I felt more comfortable starting

chelation b/c he hadn't had a seizure in over 6 months by the time we started.

Andy did suggest trying the ketogenic diet, but said not to be afraid to

use the prescribed medication to get the seizures controlled. I may try the

diet in the future to see if we can scale back the depakote, but probably not

until we are done chelating.

I will say that it's been about a year and I didn't see a whole lot of

progress the last 6 or 7 months. We just added L-Carnetine that his

neurologist

prescribed b/c he had a high lactate level and all of a sudden I'm seeing a

whole lot of progress and change in behaviors for the better!! I don't know if

it's due to the L-Carnetine or the stall period in the chelation, but

whatever it is, I'm hoping it will continue!!!

Carla

[Guest guest]

May I ask, in your terms, what exactly counts as a seizure?

> >

> > > I do not plan on putting her back on any anti seizure meds at

this

> > > time. So what I understand is that you would not suggest

chelating

> > > then if there is still a chance of occasional seizures?

> >

> > You might try carefully. Maybe you'll be able to do it. I thnk

it

> would be much wiser to

> > put her on a seizure med if there are any problems that suggest a

> need for it and only

> > leave her of them if things clearly are fine.

> >

> > I do not think you are acting in your child's best interest if you

> will not put her on a

> > seizure medication and then can't chelate her. What is your issue

> with the seizure

> > medications? Did I miss something or forget some earlier

discussion?

> >

> > Andy

> >

>

[Guest guest]

> >

> > > I do not plan on putting her back on any anti seizure meds at this

> > > time. So what I understand is that you would not suggest chelating

> > > then if there is still a chance of occasional seizures?

> >

> > You might try carefully. Maybe you'll be able to do it. I thnk it

> would be much wiser to

> > put her on a seizure med if there are any problems that suggest a

> need for it and only

> > leave her of them if things clearly are fine.

> >

> > I do not think you are acting in your child's best interest if you

> will not put her on a

> > seizure medication and then can't chelate her. What is your issue

> with the seizure

> > medications? Did I miss something or forget some earlier discussion?

> >

> > Andy

> >

>

[Guest guest]

Thank you for your concern in this matter. At times I feel like I am

swimming upstream.

My daughter has had tonic clonic seizures from the beginning. At first

she was able to tell us that she had multiple thoughts, left hand

would shake, head would turn to the left and she was down for as long

as 5 min. Her seizures then remained as typical tonic clonic, only

that she could not remember what occurred previous to the seizure.

Lately since she has started the neurofeedback, we see a change back

to the complex partial seizures and then nothing more. She has only

had one status seizure and that was after consuming a large dose of

candy. I do believe there has been a connection with certain

ingredients in processed foods.

She has tended to have her seizures at a particular time of the day,

so I was thinking it might be an insulin issue. She is up early and

does an hour workout, goes to school, and from 10 - 12:30 is when the

majority have happened. Rarely she has had them in the evening

following a workout.

She has been constipated her whole life, so I have been making the

connection there as well. That is why I increased her magnesium to

1000mg per day (split am/pm) with two doctors approval. When ever I

come down from that amount, her constipation returns. When I have

focused on her intestinal tract, her seizures improve as well. As long

as she is following a clean diet.

The medications choices were made by two different neuros. The first

doctor said that there was no connection between hormones and seizures

and no connection between diet and seizures. He prescribed Tegretol

(side effect being vision loss for as long as two days so she was

given an aide at school), gabapentin (side effect being suicidal

thoughts). I did not want to stay and educate him about diet and

hormones, so we went for a second opinion.

The second neuro, after a 20 min interview said that this was PNES and

medication was not necessary. Even though there is evidence of a

heterotopia in the frontal lobe, and the first EEG is abnormal. The

seizures continued, and it was evident that she was having a misfiring

in the brain especially around her cycle, so I found another doctor

that has a specialty in this area.

The third neuro is the one that prescribed Lamictal (side effect being

EXTREME muscle ache and rash), and Trileptal (side effect being fever,

sore throat, " skin crawling " especially scalp area) I have always

wanted to ask about why Trileptal was prescribed because even I have

found the info that says if tegretol doesn't work then trileptal

should not be a choice. I decided that I would not " rock " the boat at

that point and went along with the decision. Certainly at the time it

was prescribed I didn't know the connection as I am not a chemist.

I work with my intuition, I observe my child, I now question my

medical team without drawing suspicion (We were dropped by a

pediatrician in the beginning), and I attempt to make logical,

intelligent decisions to the best of my ability. This certainly isn't

my field of expertise.

My daughter was fine for 14 yrs of her life. There was no known head

injury, there was no birth defect other than the heterotopia. I want

to get her back to the state of health that she was in prior to her

first seizure. I am following any an all clues. Mercury is one concern

that I have, and I wonder if I should ask this of her current

neurologist. We have a scheduled appt. this Wednesday.

Thank you for reading 's story.

Robin

> >

> > We tried four AEDs with terrible results, and side effects.

> > Tegretol XR, Gabapentin, Lamictal, Trileptal

>

> Whomever prescribed didn't seem to have much of a clue, if you don't

tolerate tegretol

> there is no possiblity you'll tolerate trileptal.

>

> I don't remember if you said which KIND of seizures? Absence? That

does get worse if

> you give people tegretol or trileptal. It is the " staring " kind,

where they freeze, not a kind

> where they move around.

>

> > I believe the seizures were increased on a few. She has had fewer

> > seizures since being off all prescription drugs. She takes an increase

> > in many vitamins and minerals at this time. For the catamenial

> > seizures she is using a bio-identical hormone. In addition she is

> > Gluten free, Casein free, Soy free, and Corn free. Preservative free

> > as well.

> >

> > I am sorry that you feel I am not acting in her best interest,

>

> Reminding me of her story (I think you told it before) makes me a

lot less concerned about

> this. I was responding to it sounding like other people who decided

" drugs " are " bad " and

> never try them. You've tried them. While in theory you could try

all the rest, it is not at all

> clear that is worthwhile even if they didn't turn your daughter into

a zombie, which most

> of them will do.

>

> > as I

> > have spent the last two years researching her needs. I have had little

> > if no help from our traditional doctors.

> >

> > There is the fact that after two AEDs the % control that the next meds

> > will be helpful is less with each trial.

>

> Yes. That is the superstition. It is somewhat true if they are

prescribed rationally.

>

> > The quality of life for a

> > young lady has been horrific on the meds. I feel I finally have my

> > daughter back, and the seizures are being reduced.

> >

> > We are doing a trial of neurofeedback, but I was hopeful to try

> > chelation on her, as her tests seem to some to be high. Perhaps that

> > is not something that I can consider, until we raise her seizure

> > threshold.

>

> The rule of thumb in chelation is that whatever is the most

bothersome problem will be

> exacerbated while on round. This is not guaranteed to happen but is

quite common. For

> her of course it is seizures.

> >

[Guest guest]

It was suggested that I explain a little more about when the seizures

are occurring.

Places where they have occurred:

Home

Different classrooms (newly remodeled school)

Hallway (alone and with other students)

Outdoors (snack, lunch)

Auditorium after a dress rehearsal for dance

Skating rink (after practice) never while moving or so it seems

I can't find a connection to " place "

Connection has been made to foods such as:

Energy drinks

MSG

HFCS

junk processed

...not always but sometimes

Connection to energy level but not necessarily sleep,

Hormones, constipation, lack of H20

Thanks again

Robin

[Guest guest]

Sorry I reread the questions asked of me and I am not sure I answered

all of them. Sunday morning brain fog.

***There is one question, it sounds like she has her seizures btw

10:30 and noon AT SCHOOL. Please clarify on the list whether they are

at school only,

> No

....whether she is going to any of the same rooms/places at school that

she has since the seizures started, etc.

> first seizures occurred at home, so I have never made a connection

to the school in terms of lights, chemicals, etc.

....Does she ever have seizures when she stays home?

> occasionally but not often

....Does she have them on weekends or school holidays?

> occasionally

....Does she have them outside this 10:30 to noon window?

> Occasionally

I do have them ALL recorded on an ongoing calendar so I could attempt

to make a chart. This just has not seemed to be necessary.

I have researched PNES. I know what to look for. I was not opposed to

the diagnosis, if it " fit " , but it does not seem to. She is also under

the care of a therapist, so I we have also discussed this with her,

and her opinion is that it is not psychogenic. Does my daughter have

emotional issues caused by the seizure disorder? You bet. Falling down

on the ground in algebra class is embarrassing.

Some auras have appeared to others:

stomach ache

faint feeling

irritability

feeling " off "

She occasionally has walked to a teacher and told them that she

doesn't feel well and then goes down.

This does not happen on " test days " and she hates to remain in the

nurses office. Always ready to get on to the next class.

Just thought you should know this.

-- In , " rednews5 " <rednews@...> wrote:

>

> It was suggested that I explain a little more about when the seizures

> are occurring.

>

>

> Places where they have occurred:

> Home

> Different classrooms (newly remodeled school)

> Hallway (alone and with other students)

> Outdoors (snack, lunch)

> Auditorium after a dress rehearsal for dance

> Skating rink (after practice) never while moving or so it seems

>

> I can't find a connection to " place "

>

> Connection has been made to foods such as:

> Energy drinks

> MSG

> HFCS

> junk processed

>

> ..not always but sometimes

>

> Connection to energy level but not necessarily sleep,

> Hormones, constipation, lack of H20

>

> Thanks again

> Robin

>

[Guest guest]

My thoughts are on a roll....

My daughter stopped attempting to learn new words around the age of 18

months. I never made the connection prior to finding some of the

groups that speak of this. She was born in 1981 and had quite a few

vaccinations at this time. She still was not speaking at 3.

My daughter was in speech class doing relatively well, improving until

the first grade. She had a regression during this time, and after

reading these groups I realized this was after her booster shots.

She has memory / processing difficulty.

Again.. I thought this was pertinent information.

[Guest guest]

You know this might be neurocardiogenic syncope. That might explain

things like no seizures when active. The mechanism is that of a

faint. As blood and oxygen flow to the brain diminish there is

seizure activity. Usually the person wakes up upon falling to the

ground, while many people are wiped out after a spell you can pick

yourself up and keep going.

If the postictal phase is absent or short I'd look into this. A

electrophysiologist cardiologist can do a tilt table test to see if

this is the mechanism. The good news is that if this is the cause a

very low dose beta blocker medication like Inderal may help. Staying

well rested and well hydrated are also helpful as well as keeping

active and avoiding high anxiety, hot stressful situations where you

have to stand still like standing on risers to sing with the glee

club or reading in front of the class or getting married in front of

a full church. You know the things that can make anyone feel faint.

Many muscians take Inderal for this reason.

Chris

> >

> > It was suggested that I explain a little more about when the

seizures

> > are occurring.

> >

> >

> > Places where they have occurred:

> > Home

> > Different classrooms (newly remodeled school)

> > Hallway (alone and with other students)

> > Outdoors (snack, lunch)

> > Auditorium after a dress rehearsal for dance

> > Skating rink (after practice) never while moving or so it seems

> >

> > I can't find a connection to " place "

> >

> > Connection has been made to foods such as:

> > Energy drinks

> > MSG

> > HFCS

> > junk processed

> >

> > ..not always but sometimes

> >

> > Connection to energy level but not necessarily sleep,

> > Hormones, constipation, lack of H20

> >

> > Thanks again

> > Robin

> >

>

[Guest guest]

If this is neurocardiogenic syncopy, ours had it, in reaction to severe pain. If

she fell too hard, she'd get up and then faint. It is usually a cal/mag

imbalance as in too much calcium and not enough magnesium, increasing magnesium

or keeping it even with calcium solved the problem here, no more fainting spells

for 1.5 years.

These freaked me out.

[ ] Re: Chelating with a Seizure Disorder

You know this might be neurocardiogenic syncope. That might explain

things like no seizures when active. The mechanism is that of a

faint. As blood and oxygen flow to the brain diminish there is

seizure activity. Usually the person wakes up upon falling to the

ground, while many people are wiped out after a spell you can pick

yourself up and keep going.

If the postictal phase is absent or short I'd look into this. A

electrophysiologist cardiologist can do a tilt table test to see if

this is the mechanism. The good news is that if this is the cause a

very low dose beta blocker medication like Inderal may help. Staying

well rested and well hydrated are also helpful as well as keeping

active and avoiding high anxiety, hot stressful situations where you

have to stand still like standing on risers to sing with the glee

club or reading in front of the class or getting married in front of

a full church. You know the things that can make anyone feel faint.

Many muscians take Inderal for this reason.

Chris

> >

> > It was suggested that I explain a little more about when the

seizures

> > are occurring.

> >

> >

> > Places where they have occurred:

> > Home

> > Different classrooms (newly remodeled school)

> > Hallway (alone and with other students)

> > Outdoors (snack, lunch)

> > Auditorium after a dress rehearsal for dance

> > Skating rink (after practice) never while moving or so it seems

> >

> > I can't find a connection to " place "

> >

> > Connection has been made to foods such as:

> > Energy drinks

> > MSG

> > HFCS

> > junk processed

> >

> > ..not always but sometimes

> >

> > Connection to energy level but not necessarily sleep,

> > Hormones, constipation, lack of H20

> >

> > Thanks again

> > Robin

> >

>

[Guest guest]

You mention vaccines. That's interesting because the recent Poling

concession made by the Department of Health and Human Services legal-

medicos included the additional nod that her vaccines relate to seizure

disorder that developed/became more pronounced when Hannah was six.

I have looked around the different seizure orgs. and learned that virus

infections such as measles, chicken pox, etc. store up in the nerves

for later on.

Doctors are often quick to ask questions about Chicken pox and Chicken

pox vaccination, for example, after a child has had a seizure because

they are a known cause.

>

> Thank you for your concern in this matter. At times I feel like I am

> swimming upstream.

>

> My daughter has had tonic clonic seizures from the beginning. At first

> she was able to tell us that she had multiple thoughts, left hand

> would shake, head would turn to the left and she was down for as long

> as 5 min. Her seizures then remained as typical tonic clonic, only

> that she could not remember what occurred previous to the seizure.

> Lately since she has started the neurofeedback, we see a change back

> to the complex partial seizures and then nothing more. She has only

> had one status seizure and that was after consuming a large dose of

> candy. I do believe there has been a connection with certain

> ingredients in processed foods.

> > >

>