Re: seizures-off topic

[Guest guest]

Crystal,

I would really like to know this too. We have been chelating very

conservatively for 3 months. Our son does great when he's on the DMSA.

We just found out he has sub-clinical epileptiform activity. We're not

treating it...yet.

Could folks please post to the lit. I'm very interested and this is an

'on-topic' question!

Thanks,

Chris

On Mon, 7 Aug 2000 11:28:20 EDT csac27@... writes:

> Hello,

>

> I was wondering how many children are dealing with seizures and

> chelating? Could you email me privately?

>

>

> crystal

> csac27@...

>

>

>

>

[Guest guest]

kathy,

Can you give me a list of things you are doing for your child with seizures.

Are they doing well, how do you chelate a child with seizures? Can I detox my

son for yeast

Crystal

[Guest guest]

Hi,

what is subclinical epileptoform activity? Is it safe to chelate with

seizures? Does anyone know the BEST seizure medicine for our kids?

Crystal

[Guest guest]

Mine are

[ ] seizures-off topic

>Hello,

>

> I was wondering how many children are dealing with seizures and

>chelating? Could you email me privately?

>

>

>crystal

>csac27@...

>

>

>

>

[Guest guest]

kathy does your son take seizure meds. Well my dilemma is my son is I am

pretty sure having seizures when he is waking from sleep, his body begins to

twitch and then he wakes. Dont know what to do now, feel like I can not make

him well anymore and I think by putting him on gfcf diet and doing this stuff

I actually brought them to the surface, somebody explain this to me, last

time i went gfcf, when my son did get something with gluten , he had two or

three seizure type episodes(eye rolling) I got freaked went to 24 hour eeg,

nothing came up. gave him back gluten and casein and saw nothing after. Now

he has been gluten and casein free with efas and other vitamins and they are

back at night? Should I even bother with this diet?

Crystal

[Guest guest]

Hi Kathy,

Autism is a breeze????? Have you been in my house the past 6 years? We

have done metabolic screen, things were off,but nothing indicative of

anything. My thoughts are my son may be a GENUINE celiac, not just

intolerant, he was never tested and shows all the tell tale signs. I have

done the temp test for thyroid, measures about 96 each day, he is very cool

in the morning. I have taken him off fatty acids, was worried that I was

doing further damage by not balancing them , we shall see tonight? Thanks

now I am really scared.

Crystal

[Guest guest]

<< Depakote is commonly used to treat

clinical seizures, but it does not really treat subclinical spike

activity. >>

Depakote has been doing wonders for the behavior of my girlfriend's son who

had exactly this - spikes on EEG but no seizures.

Andy Cutler

[Guest guest]

In a message dated 08/07/2000 9:02:56 PM Eastern Daylight Time,

kblanco@... writes:

<< I advocate (remember, just a mom here) B complex vitamins with CoQ10 or SNT

p5p, essential fatty acids, monolaurin, ambrotose, pregnelelone, b-12

injections even or sublingual, working on the gut with spectrazyme and yeast

avengers, low carbs, high fats, lots of proteins, ESSIAC tea, cAMP

forskolin, magnesium in many forms such as malate, epsom baths, a nice mag,

cal and zinc formulation, cranial sacral therapy, taking also microhydin to

restore pH and work on nitrous oxide problems, no sugar, NO FLOURIDE, no

aspartame, no sugar, gluten or cassein free (if can't do both at least

cassein), Vitamin A cis, TMG with Folic (add more folic to the kirkman

brand), C, E, and K, niacinimide, the product SPORT from manantech (leaches

out lactic acid, made from he hems from cows which is full of ALA), ginko

biloba, SAMe and or 5htp (watch for mix with pharmacrap), SOMETIMES

immunocal (don't do that everyday, get's toxic for PST kids), lots of rests

and naps, butyrate calcium (allergy group), brewers yeast. Those are the

ones that come to mind off the bat.

Now, I don't think I am going to get complete control unless I get this

shitty mercury out (as illustrated in my post about a seizure last night).

It will be a nightmare hence, since I think I am walking a very delicate

balance with chelating, restoring and regrouping, he is quite frail, not

anything like my daughter who is husky and quite hi functioning. He is

quite literally starving to death with yeast toxins in my opinion, he is

absorbing NOTHING.

KAthy

>>

Kathy:

Just a thought from another mom here...but maybe some of this already

overloaded suppliment program is more the problem than the DMSA??? Amy...any

ideas here?

I just hate to hear of such troubling issues...seizures are intensely

frightening. Is there anything in this long list that could possibly

increase the effects? First thoughts of mine would be extremely high B's

between the SNT and injections; perhaps elevated magnesium intake through the

epsom salts, malate, etc. you've listed. How do you plan to wean some of

these things after chelation (or during)? I feel your children won't need

near as many doses and in so many different forms as you have listed? Any

thoughts anyone?

[Guest guest]

Kathy:

I'm right there with you ... cynical...to say the least! You're in our

prayers, dear friend!

[Guest guest]

Same boat. Subclinical seizures (actually spike activity on MEG). No

antiseizure meds.

J. Segal

--- In egroups, D Bogert <howard78@j...>

wrote:

> Crystal,

> I would really like to know this too. We have been chelating very

> conservatively for 3 months. Our son does great when he's on the

DMSA.

> We just found out he has sub-clinical epileptiform activity. We're

not

> treating it...yet.

>

> Could folks please post to the lit. I'm very interested and this

is

an

> 'on-topic' question!

>

> Thanks,

> Chris

>

> On Mon, 7 Aug 2000 11:28:20 EDT csac27@a... writes:

> > Hello,

> >

> > I was wondering how many children are dealing with seizures

and

> > chelating? Could you email me privately?

> >

> >

> > crystal

> > csac27@a...

> >

> >

>

> >

> >

[Guest guest]

Subclinical seizures are measured by EEG or MEG, but not seen as

obvious seizure to an observer. I don't know if it is safe or not

safe

to chelate with the history. If toxicity is fueling the process,

there

may not be much of a choice. Depakote is commonly used to treat

clinical seizures, but it does not really treat subclinical spike

activity.

Treatment of spike activity includes: (a) steroids + Depakote; (

IVIG; © vagal nerve stimulation; (d) multiple subpial transection.

Supplements such as taurine and magnesium may help. Ketogenic diet

may

help. Anecdotally, Tegretol may actually increase frequency of spikes.

The short answer is that clinical seizures should be treated if they

are frequent.

J. Segal

> Hi,

>

> what is subclinical epileptoform activity? Is it safe to

chelate with seizures? Does anyone know the BEST seizure medicine

for

our kids?

>

>

> Crystal

[Guest guest]

Well,

Interstingly I am having problems with CLO, as according to Dr McGinnis, is

a problem for SOME kids with seizures. Therefore I built up on EPO for a

while to see if he can convert it better, sometimes he does, sometimes he

doesnt ( I hope people feel I am also working on my daughter too, but she is

what I call, semi recovered). I definately have a child with a

mitochondrial component to his seizures, building up lactic and pyruvate,

but as you know, a high sign of mercuralism.

I advocate (remember, just a mom here) B complex vitamins with CoQ10 or SNT

p5p, essential fatty acids, monolaurin, ambrotose, pregnelelone, b-12

injections even or sublingual, working on the gut with spectrazyme and yeast

avengers, low carbs, high fats, lots of proteins, ESSIAC tea, cAMP

forskolin, magnesium in many forms such as malate, epsom baths, a nice mag,

cal and zinc formulation, cranial sacral therapy, taking also microhydin to

restore pH and work on nitrous oxide problems, no sugar, NO FLOURIDE, no

aspartame, no sugar, gluten or cassein free (if can't do both at least

cassein), Vitamin A cis, TMG with Folic (add more folic to the kirkman

brand), C, E, and K, niacinimide, the product SPORT from manantech (leaches

out lactic acid, made from he hems from cows which is full of ALA), ginko

biloba, SAMe and or 5htp (watch for mix with pharmacrap), SOMETIMES

immunocal (don't do that everyday, get's toxic for PST kids), lots of rests

and naps, butyrate calcium (allergy group), brewers yeast. Those are the

ones that come to mind off the bat.

Now, I don't think I am going to get complete control unless I get this

shitty mercury out (as illustrated in my post about a seizure last night).

It will be a nightmare hence, since I think I am walking a very delicate

balance with chelating, restoring and regrouping, he is quite frail, not

anything like my daughter who is husky and quite hi functioning. He is

quite literally starving to death with yeast toxins in my opinion, he is

absorbing NOTHING.

KAthy

Re: [ ] seizures-off topic

>kathy,

>

> Can you give me a list of things you are doing for your child with

seizures. Are they doing well, how do you chelate a child with seizures?

Can I detox my son for yeast

>

>Crystal

>

>

>

>

[Guest guest]

Subclinical, a doctors way of saying I don't know what to do for you, and

BEST is probably NOTHING. Go on a KETOGENIC diet and go from there. Best

may have to be settled for what fits the kid, what amounts of mercury

poisened are they, and if it hits a certain area of the brain correctly.

Unfortunately pharmokenetics and neuros are bedfellows to " let's experiment

on this drug, all I know is what happens to the rat or guine pig LOL. They

will rush in like always to hide the seizure and bury it deeper into the

brain or mask it so to speak. Sometimes when you do that you also mask the

childs personality, their ability to cope and feel better and to even

connect unfortunately....can you tell I am cynical? I am getting rather

pissed at the medical field at the moment so don't mind me!

KAthy

Re: [ ] seizures-off topic

>Hi,

>

> what is subclinical epileptoform activity? Is it safe to chelate with

seizures? Does anyone know the BEST seizure medicine for our kids?

>

>

>Crystal

>

>

>

>

[Guest guest]

He is taking DILANTIN and weaning off of neurontin. ARGH. We hate DILANTIN

with a passion, it is getting to be non effective for him. (has been on that

since 13 years old). Neurontin recently has increased seizures, so we are

weaning it off. I would really look into KETOGENIC diets, I know, they are

a pain in the butt, but you may be able to head it off at the pass by

controlling them NOW, or else you will look at kindling them into further

bad seizures . Seizures are famous upon sleeping and arising, so look at

THYROID function tooooo. Also, do blood sugar tests etc. Now you must

know, these are all signs of mercury poisining don't you? another

ARRRGGGHHHH. Taking away the diet, putting him back on can do wacky things

to your metabolism that would by my guess. Also, look into the behaviour

of his fatty acids, which ones are below par and above par, and work on

balancing them. CRANIAL sacral therapy was a total switch for my kids to

get better, look into that too. As I have said all along, and I will say

it on the forum, AUTISM IS A BREEZE ALONE,. wait till you put SEIZURES in

the mix, that is the nasty break your heart, pain in the butt, marriage

stressor than anything I have ever experienced, as if someone is always

" sick " in the home. STRESS to the MAX. HAve you done a urine metabolic

screen to check for signs of anykind of metabolism problems?

Kathy

Re: [ ] seizures-off topic

>kathy does your son take seizure meds. Well my dilemma is my son is I am

>pretty sure having seizures when he is waking from sleep, his body begins

to

>twitch and then he wakes. Dont know what to do now, feel like I can not

make

>him well anymore and I think by putting him on gfcf diet and doing this

stuff

>I actually brought them to the surface, somebody explain this to me, last

>time i went gfcf, when my son did get something with gluten , he had two or

>three seizure type episodes(eye rolling) I got freaked went to 24 hour eeg,

>nothing came up. gave him back gluten and casein and saw nothing after.

Now

>he has been gluten and casein free with efas and other vitamins and they

are

>back at night? Should I even bother with this diet?

>

>

>Crystal

>

>

>

>

[Guest guest]

At least in some respects, I think autism is way more easy than a seizure

disorder, but that is just me? And of course, I take only in account my

children who are quite passive and loving, as opposed to others who are

hyper and get into trouble lol. (althought they hhave those autistic

moments, like today for instance). I guess what I am trying to say, is that

the epilepsy makes you even more isolated, you can't go anywhere for fear of

their safety (literally even their lives). I believe the SAME thing with

celiac! I have a child who is very much wasting before my eyes, and of

course all neuros will say it is mitochondrial in my case. To see more, go

to my web site, and spy on my kids and see what I mean. Go to the

poetry section where I have some pictures (sorry, they are purposely fuzzy

for a reason, I get the creeps posting really good pictures)

http://home1.gte.net/jblanco2

Go to the autism section then the poetry (be patient, it takes a good three

minutes to download) and pan through some of the poems and pictures. Celiac

and mercury, let me think this one through....they say they are spraying our

wheat fields with mercury like substances, hmmmm? Could it be that our

wheat supply is mercuralized (and not to mention our soils and air) and that

ingestion of this is also breaking our kids backs as far as toxic load?

Balancing fatty acids, this is my problem too. I give CLO then I get

seizures, so I work on EPO for a while, then he get's seizures, then I get a

balanced neuromins formulation, seizures, it is a strange monkey to say the

least!

Don't get scared, get angry, like me these past few days, I feel especially

angered at vac's companies and doctors who are complete and utter idiots

when it comes to our kids. Not to mention the insurance companies who still

acknowledge this is a psychiatric disorder....GEEZ.

Kathy

Re: [ ] seizures-off topic

>Hi Kathy,

>

> Autism is a breeze????? Have you been in my house the past 6 years?

We

>have done metabolic screen, things were off,but nothing indicative of

>anything. My thoughts are my son may be a GENUINE celiac, not just

>intolerant, he was never tested and shows all the tell tale signs. I have

>done the temp test for thyroid, measures about 96 each day, he is very cool

>in the morning. I have taken him off fatty acids, was worried that I was

>doing further damage by not balancing them , we shall see tonight? Thanks

>now I am really scared.

>

>

>Crystal

>

>

>

>

[Guest guest]

b-12 injections are on a schedule, on and off. My children display PELLAGRA

symptoms, so they really need the extra B. I take one thing off, I notice

the difference BIG TIME. IT sounds like more than usual, but my kids are

not that usual, especially becuase some of these things were recommened by

many experts in light of my son having a LEIGHS like syndrome ( a death

sentence ). Many neuros will say, treat the high oxidative stress and give

them mitochondrial support, most of these do that.

Kathy

Re: [ ] seizures-off topic

>In a message dated 08/07/2000 9:02:56 PM Eastern Daylight Time,

>kblanco@... writes:

>

><< I advocate (remember, just a mom here) B complex vitamins with CoQ10 or

SNT

> p5p, essential fatty acids, monolaurin, ambrotose, pregnelelone, b-12

> injections even or sublingual, working on the gut with spectrazyme and

yeast

> avengers, low carbs, high fats, lots of proteins, ESSIAC tea, cAMP

> forskolin, magnesium in many forms such as malate, epsom baths, a nice

mag,

> cal and zinc formulation, cranial sacral therapy, taking also microhydin

to

> restore pH and work on nitrous oxide problems, no sugar, NO FLOURIDE, no

> aspartame, no sugar, gluten or cassein free (if can't do both at least

> cassein), Vitamin A cis, TMG with Folic (add more folic to the kirkman

> brand), C, E, and K, niacinimide, the product SPORT from manantech

(leaches

> out lactic acid, made from he hems from cows which is full of ALA), ginko

> biloba, SAMe and or 5htp (watch for mix with pharmacrap), SOMETIMES

> immunocal (don't do that everyday, get's toxic for PST kids), lots of

rests

> and naps, butyrate calcium (allergy group), brewers yeast. Those are the

> ones that come to mind off the bat.

> Now, I don't think I am going to get complete control unless I get this

> shitty mercury out (as illustrated in my post about a seizure last night).

> It will be a nightmare hence, since I think I am walking a very delicate

> balance with chelating, restoring and regrouping, he is quite frail, not

> anything like my daughter who is husky and quite hi functioning. He is

> quite literally starving to death with yeast toxins in my opinion, he is

> absorbing NOTHING.

> KAthy

>

> >>

>Kathy:

>Just a thought from another mom here...but maybe some of this already

>overloaded suppliment program is more the problem than the DMSA???

Amy...any

>ideas here?

>I just hate to hear of such troubling issues...seizures are intensely

>frightening. Is there anything in this long list that could possibly

>increase the effects? First thoughts of mine would be extremely high B's

>between the SNT and injections; perhaps elevated magnesium intake through

the

>epsom salts, malate, etc. you've listed. How do you plan to wean some of

>these things after chelation (or during)? I feel your children won't need

>near as many doses and in so many different forms as you have listed? Any

>thoughts anyone?

>

>

>

>

>

[Guest guest]

Just my two cents on this. My son started having seizures around 9 or 10,

and we treated with Depakote. We no longer saw them and things seemed to be

okay. Several years later, out of the blue, he had a day of prolonged

seizures--couldn't see at times, one side of the body seemed more affected,

etc. --it was awful. We ended up in the hospital, and they told us he had

probably had Scarlatina?? Anyway, the neuro upped his medication to 12

capsules a day. Several years later, another specialist told us to take him

off the meds slowly, which we did, and he no longer takes anything. He also

started using Facilitated Communication around 5th grade, and he told us

that the meds didn't do any good--they just covered up the seizures but he

was still having them. So he wanted off the medicine! Anyway--makes me

wonder how often this happens???? How " drugged " was he for too long!

Barb

[ ] Re: seizures-off topic

>Subclinical seizures are measured by EEG or MEG, but not seen as

>obvious seizure to an observer. I don't know if it is safe or not

>safe

>to chelate with the history. If toxicity is fueling the process,

>there

>may not be much of a choice. Depakote is commonly used to treat

>clinical seizures, but it does not really treat subclinical spike

>activity.

>Treatment of spike activity includes: (a) steroids + Depakote; (

>IVIG; © vagal nerve stimulation; (d) multiple subpial transection.

>Supplements such as taurine and magnesium may help. Ketogenic diet

>may

>help. Anecdotally, Tegretol may actually increase frequency of spikes.

>

>The short answer is that clinical seizures should be treated if they

>are frequent.

>

>J. Segal

>

>> Hi,

>>

>> what is subclinical epileptoform activity? Is it safe to

>chelate with seizures? Does anyone know the BEST seizure medicine

>for

>our kids?

>>

>>

>> Crystal

>

>

>

>

>

[Guest guest]

Dear Crystal,

Many of the children with seizure activity do not respond to standard

treatment. This includes anticonvulsants, steroids, and even multiple subpial

transsection surgery. We have tried all of these for our son. IVIG in high

doses might help but this has also not been established. The seizures seem to

break through every treatment. I think there is a possibility that the

seizures are due to toxicity and that removing mercury might help them. We

have noticed a slight increase in absence seizures during chelation but it

seems to be getting better as we go along. Others have reported the same

thing. One parent reported increased seizure activity and ?possibly a grand

mal seizure in her son. I have not noticed anything like this and feel

comfortable with what we are doing but I have been a little more conservative

in using a 3 days on 4 days off protocol with DMSA. It is possible that

removing mercury could make any antiseizure treatment work better.

Ken Sokolski

[Guest guest]

<< and even multiple subpial

transsection surgery. We have tried all of these for our son. >>

Including the surgery?

Andy

[Guest guest]

Yes, even this. He was having so many seizure episodes and his behavior was

so out of control that we finally resorted to this procedure. It actually

helped greatly initially but he slipped back part way after several months.

He was talking a great deal after the surgery suggesting that the seizures

were the basis of his inability to use expressive language. If I had known

about the mercury problem at that time and what to do about it, I would have

tried chelation first. Going through the surgery was an incredible ordeal.

Ken Sokolski

[Guest guest]

My son was having regular absence seizures and a few possible myclonic/grand

mal in the early days of detoxing. Looking back, he had the absence off and

on well before we began chelation but we didn't know what we were looking for

and they did get worse as we began treatment. They almost totally

disappeared after a few rounds of DMSA and only return very briefly for short

periods when he is detoxing too fast or overloaded and a few times when

really stretching himself academically or theraputically. They are very rare

now. We never used medication.

Gaylen

[Guest guest]

In a message dated 8/7/00 4:09:59 PM Central Daylight Time, csac27@...

writes:

<< Can you give me a list of things you are doing for your child with

seizures. Are they doing well, how do you chelate a child with seizures? >>

What type of seizures does your child have? (sorry if you've already

answered this)

Gaylen

[Guest guest]

In a message dated 8/7/00 8:02:59 PM Central Daylight Time,

kblanco@... writes:

<< Interstingly I am having problems with CLO, as according to Dr McGinnis, is

a problem for SOME kids with seizures. >>

It's my understanding that CLO can be tough on a weak liver. My son used to

have trouble with it when his seizures were frequent but after a few years of

chelation, detoxing and overall building of health, he's handling it without

a problem. He also had a lot of trouble with SNT -- lots of waking up at

night between 2-4 am (the prime time for liver cycle according to

kinnesologists).

Gaylen

[Guest guest]

He has myclonic jerks in his sleep.

Crystal

[Guest guest]

In a message dated 8/7/00 10:12:52 PM Central Daylight Time,

fullarmor@... writes:

<< I just hate to hear of such troubling issues...seizures are intensely

frightening. Is there anything in this long list that could possibly

increase the effects? First thoughts of mine would be extremely high B's

between the SNT and injections; perhaps elevated magnesium intake through

the

epsom salts, malate, etc. you've listed. How do you plan to wean some of

these things after chelation (or during)? I feel your children won't need

near as many doses and in so many different forms as you have listed? Any

thoughts anyone? >>

After years of trying various supplemental programs, I've come to realize

that less is more in the case of my son -- formerally very frail and pale,

thankfully now getting extremely strong, color in face etc. I'm sure it

really varies with each individual on what they need but I find when we get

too much in the pot, things get off balance easier. Our personal experience

with some of the things listed includes more hyperactivity and seizure

activity with the Bs, SNT and Essaic tea. That was a bummer for him since

I've heard of those being extremely helpful for some kids. Magnesium helps

him greatly in all areas but he's tested as having trouble processing

methionine fully with a breakdown at the magnesium-dependent step so this may

be highly individual to him. Unfortunately, with autism and metals

toxicity, it's never a one-size-fits-all thing so we have to watch each

individual carefully and adjust accordingly.

Gaylen