seizures

[Guest guest]

--- & Becky <beckeric@...> wrote:

> > My son was diagnosed with absence-type seizures

> > that do not show up on an EEG.

Are you sure they don't show up on EEGs? While my son did have a few

isolated myclonic (possibly) seizures in the past, most of his were the

absence-type and his neuro recently ran a 48-hr EEG to test for seizure

activity. I thought at least some activity would show up if he had had an

absence seizure while on the unit.

Gaylen

[Guest guest]

i believe my son also had these. when we removed

wheat and milk and other allergenic foods, they did

seem to go away. we had no diagnosis, but there were

definite " spaceouts " . barb

--- & Becky <beckeric@...> wrote:

> My son was diagnosed with absence-type seizures

> that do not show up on an EEG. He does not collapse

> or twitch, just stares for 10-15 secs and is

> nonresponsive till he abruptly " snaps " out of it and

> is completely normal.

> Since putting him on an elimination/rotation

> diet they have greatly decreased in frequency and

> severity.

> Becky

> Re: seizures

>

>

> These could be seizure but what came to mind to me

> when you described this is

> the horrible periods of narcoleptic-type of

> sleepiness I'd suddenly get

> throughout the day when I was really ill several

> years ago. Allergies to

> certain foods would make it occur more often.

> Perhaps keeping a log of what

> he eats and is exposed to when he has these may

> give you another angle to

> look at? If it's allergy for me, it occurs 1-2

> hours after eating.

> Gaylen

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

why was arsenic being sprayed in your neighborhood? I

have never heard of this. how awful.

don't forget to give me a call about the

lindamood-bell. talk with you soon. barb ps: when

is your child scheduled for his visit with dr. g? we

are nov 8.

--- googahly@... wrote:

> In a message dated 9/4/02 10:40:01 AM Central

> Daylight Time,

> barbkatsaros@... writes:

>

>

> > Gaylen, What was identified as being your health

> problem?

>

> I was arsenic poisoned from over-spraying in our old

> neighborhood. I also

> had a candida infestation and multiple

> allergies/intolerances.

>

> > Are you planning on seeing dr. g for yourself

> also?

>

> Probably not unless Dr. G feels it's a good idea.

> I'm pretty healthy now and

> rarely have the problems I used to have.

> Gaylen

>

>

> [Non-text portions of this message have been

> removed]

>

>

=====

Barb Katsaros

barbkatsaros@...

__________________________________________________

[Guest guest]

,

I'm so sorry about your son's poison ivy. I hope you don't mind me asking

but I am curious about the steroids, I thought they usually contributed to

weight gain. Do you think that being on them has hindered the protocol at

all?

Re: seizures

> >

> >

> > Gaylen, What was identified as being your health

> > problem? I've had some really weird things happen

> > with my health also and wonder if whatever my kids

> > have is a genetic tendency that they have inherited

> > from me. Are you planning on seeing dr. g for

> > yourself also? I have thought of it, but then i hold

> > back. Maybe later... Barb

> > --- googahly@... wrote:

> > > In a message dated 9/4/02 9:01:15 AM Central

> > > Daylight Time,

> > > dmccreary@... writes:

> > >

> > >

> > > > You mentioned low blood sugar, that's interesting

> > > because we have noticed

> > > > that since being on the protocol his appetite has

> > > increased (it was always

> > > > good), but sometimes now when he doesn't get to

> > > eat right on time he gets

> > > > really cranky, and he never used to

> > >

> > > That happened to me as I began to heal. There was a

> > > period where I'd have to

> > > eat at least a little every 2-3 hours or feel really

> > > off. Testing never

> > > showed hypoglycemia or diabetes but I'd really

> > > noticed a difference if I

> > > waited too long before eating. That lasted about a

> > > year and then, as I was

> > > healthier, I could space out snacks more and now

> > > have no problem with it. I

> > > think that once you start stirring things up, you

> > > body goes a little out of

> > > balance before healing and you are more sensative to

> > > things for a little

> > > while.

> > > Gaylen

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> >

> > =====

> > Barb Katsaros

> > barbkatsaros@...

> >

> > __________________________________________________

> >

[Guest guest]

Gaylen,

So did your son's show up on the EEg at all? We've had the standard 30min and

and 8 hr. with video EEG. While on the 8hr video EEg, he had a couple of visible

staring episodes which were caught on video, but the EEg tracings were all

completely normal.

Becky

Re: seizures

--- & Becky <beckeric@...> wrote:

> > My son was diagnosed with absence-type seizures

> > that do not show up on an EEG.

Are you sure they don't show up on EEGs? While my son did have a few

isolated myclonic (possibly) seizures in the past, most of his were the

absence-type and his neuro recently ran a 48-hr EEG to test for seizure

activity. I thought at least some activity would show up if he had had an

absence seizure while on the unit.

Gaylen

[Guest guest]

In a message dated 9/5/02 1:39:26 AM Central Daylight Time,

beckeric@... writes:

> So did your son's show up on the EEg at all?

No but he didn't have any of the staring spells while hooked up to the unit.

His noticable seizures are mostly gone now and we ran the test just to rule

out the possibility of underlying seizure activity we weren't noticing that

could be affecting attention span. Since the doc knew most of his were

absence, I figured he'd say if they didn't show up but I'll have to ask about

that. EEGs are pretty iffy anyway, though those longer than a day are

probably more accurate. One girl who had a room next to my son's during the

EEG had been there for a week with no seizure even though she was there

because she was having so many every day she couldn't function. I think part

of the problem with picking up some seizures on EEG is that they make you sit

still most of the time or stay in a very small area rather than getting you

on an average day.

Gaylen

[Guest guest]

In a message dated 9/5/02 7:58:13 AM Central Daylight Time,

sharnitap@... writes:

> I have noticed that my son's leg trembles sometimes,

> the doctor did not think it was uncontrollable, she

> thought he was doing it himself but I don't think so.

> Could this be a sign of something.

>

Without other signs, I'm not sure if this would be a seizure thing or not.

But then I'm not really well versed on all the different types of seizure.

If he is taking medication like Risperdol or Zyprexa, this could be a side

effect. We just went through this with my grandmother. It started gradually

and then spread all over until someone finally thought about the meds.

Sometimes hyper folks get a restless leg thing where they subconsciously

shake one or both legs. Then again, it doesn't hurt to talk to a neuro if

you suspect seizure.

Gaylen

[Guest guest]

I have noticed that my son's leg trembles sometimes,

the doctor did not think it was uncontrollable, she

thought he was doing it himself but I don't think so.

Could this be a sign of something.

--- & Becky <beckeric@...> wrote:

>

> Gaylen,

>

> So did your son's show up on the EEg at all? We've

> had the standard 30min and and 8 hr. with video EEG.

> While on the 8hr video EEg, he had a couple of

> visible staring episodes which were caught on video,

> but the EEg tracings were all completely normal.

>

> Becky

> Re: seizures

>

>

>

>

> --- & Becky <beckeric@...> wrote:

>

> > > My son was diagnosed with absence-type

> seizures

> > > that do not show up on an EEG.

>

> Are you sure they don't show up on EEGs? While my

> son did have a few

> isolated myclonic (possibly) seizures in the past,

> most of his were the

> absence-type and his neuro recently ran a 48-hr

> EEG to test for seizure

> activity. I thought at least some activity would

> show up if he had had an

> absence seizure while on the unit.

> Gaylen

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

You might want to try a 48 or 72 hour EEG to make sure nothing is missed. The

overnight EEG we used had an event button you pushed if there appeared to be a

seizure. I think by pushing the button, it takes readings more frequently

during that time, and calls attention to the " event " . If you do a longer EEG,

my advice would be to do it during the week, so you can take your child in right

away to repair any electrodes that come off (it's not easy keeping them hooked

up for 3 days!)

[Guest guest]

Re: your son's leg trembles--could it possibly be tardive dyskinesia? Tardive

dyskinesia is a condition which can occur after receiving an offending " agent, "

such as some medications, which triggers involuntary movements. I don't know

much about the condition, but have heard of it several times. I know I've seen

material written about it in the Autism Research Review newsletter.

Heidi

Re: seizures

In a message dated 9/5/02 7:58:13 AM Central Daylight Time,

sharnitap@... writes:

> I have noticed that my son's leg trembles sometimes,

> the doctor did not think it was uncontrollable, she

> thought he was doing it himself but I don't think so.

> Could this be a sign of something.

>

Without other signs, I'm not sure if this would be a seizure thing or not.

But then I'm not really well versed on all the different types of seizure.

If he is taking medication like Risperdol or Zyprexa, this could be a side

effect. We just went through this with my grandmother. It started gradually

and then spread all over until someone finally thought about the meds.

Sometimes hyper folks get a restless leg thing where they subconsciously

shake one or both legs. Then again, it doesn't hurt to talk to a neuro if

you suspect seizure.

Gaylen

[Guest guest]

Becky,

Are " absence-type " seizures the same as petit mal seizures? I'm not clear if

these are the same, or two different types.

Thanks for the help!

Heidi

Re: seizures

These could be seizure but what came to mind to me when you described this is

the horrible periods of narcoleptic-type of sleepiness I'd suddenly get

throughout the day when I was really ill several years ago. Allergies to

certain foods would make it occur more often. Perhaps keeping a log of what

he eats and is exposed to when he has these may give you another angle to

look at? If it's allergy for me, it occurs 1-2 hours after eating.

Gaylen

[Guest guest]

Have his mineral levels checked ASAP and make sure he is well mineralized.

DMPS often depletes good mineral levels and mineral imbalance can lead to

seizures. Fortunately, these are usually temporary and easily corrected once

the

minerals are rebalanced. My son used to have seizures. He also used DMPS when

he was chelating years ago (prior to starting ). There have been a few

periods when the seizures have returned briefly but they have always quickly

abated once we got him back into balance. Feel free to write me off-list if it

would be helpful.

Gaylen

[Guest guest]

Thanks, Lynn, for your info. I think I will ask to have the EEG repeated in

a few months, after cutting way down - and possibly off - Strattera. I have

been told recently by a ped. neurologist that approx. 30% of kids with

" autism " develop seizures. I believe Dr. Goldberg would agree with these

numbers

and sees this, unfortunately, as a disease progression. This is why we all

need to support Dr. Goldberg in his efforts, which have been ongoing since I

met him more than 10 years ago, to communicate with anyone who works with

children, that this is an inflammatory disease process rather than some sort of

static brain damage per se and that all efforts to develop the use and scope

of immunodulatory meds to treat this disease.

Most, if not all, of the educators, therapists and doctors we have met over

the years, have tended to view our children as having been damaged by genetic

or other single causes at some point in the past, that what is done is done,

and that our children have no real hope for change. It is an enormous task

to change that static view and see this as a disease with the possibility for

healing or, as with the seizures developing, a worsening of the disease

process. Lending copies of the DVD from Dr. Goldberg's recent

presentation

to a large group of doctors and parents in Alabama would be one step that we

parents can do to help educate others, with the goal of obtaining their

support.

mary

[Guest guest]

Lynn, our son has just recently begun having seizures and he is 19 years old.

His first seizure was last February and he has had 2 more. Dr. G says it's all

part of the irritable immune system, which is affecting his neurological system

and resulting in seizures. I wonder how many other parents have experienced

seizures with their children?

Seizures

My daughter has had seizures since a trial of Ritalin. They are

directly related as we stopped the Ritalin the seizures stopped(we

thought they we ticks). We gave it a second try and the seizures

returned and didn't go away after stopping Ritalin. She was VERY OVER

FOCUSED on Ritalin. A recent EEG showed elevated Beta waves(flight or

fight response)(these drugs increase Beta waves to increase attention).

I believe we short circuted her brain with Ritalin as her Beta waves

were above normal without meds. My understanding is that ADD can be

accurately diagnosed with an EEG, but it isn't done due to costs. Its

cheaper to do trial and error with meds. In 8 years they have not gone

away. We continue hoping. Proceed cautiously with these drugs and

request an EEG first....

Lynn Pukylo

MOM to Abbey, PDD-NOS, age 14

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

HI, I'll bet quit a few have seizures. I know its prevalent in the

Autism community in general. This is all tied together for sure.

My gut the 12 years we struggled was that Abbey had a medical

problem not a pychiatric one............Its so sad that so many

continue to believe this. What ever caused the seizures, I would

still advise ALL parents to have an eeg done before the use of these

meds.......The risk is too high.....

Lynn

>

> Lynn, our son has just recently begun having seizures and he is

19 years old. His first seizure was last February and he has had 2

more. Dr. G says it's all part of the irritable immune system, which

is affecting his neurological system and resulting in seizures. I

wonder how many other parents have experienced seizures with

their children?

>

> Seizures

>

>

>

>

> My daughter has had seizures since a trial of Ritalin. They are

> directly related as we stopped the Ritalin the seizures stopped(we

> thought they we ticks). We gave it a second try and the seizures

> returned and didn't go away after stopping Ritalin. She was VERY

OVER

> FOCUSED on Ritalin. A recent EEG showed elevated Beta waves

(flight or

> fight response)(these drugs increase Beta waves to increase

attention).

> I believe we short circuted her brain with Ritalin as her Beta

waves

> were above normal without meds. My understanding is that ADD can

be

> accurately diagnosed with an EEG, but it isn't done due to costs.

Its

> cheaper to do trial and error with meds. In 8 years they have not

gone

> away. We continue hoping. Proceed cautiously with these drugs and

> request an EEG first....

>

> Lynn Pukylo

> MOM to Abbey, PDD-NOS, age 14

>

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent

Coalition.

>

>

[Guest guest]

Hi ,

I hope you can continue your seizure meds! Seizures

can be very dangerous, most people with epilepsy don't know

that. I almost died from 2 that I had

a year and a half ago.

I don't mean to be a pest but plz do whatever you

can to stay on the meds

Take care,

'

[Guest guest]

Hello all

I had a few questions for all when you get a minute..... sorry I have not been in touch lately, I have been ill. Last Sunday I had a series of seizures - pretty violent ones from what my hubby said. Luckily all but one happened at the doctor, which called an ambulance and I was hospitalized for 3 days. On the last one I stopped breathing which has my hubby totally freaked out as he saw the whole thing including them bringing me back..... I am very scared and have no idea why this happened. They ran a ton of tests at the hospital and could not explain them. I am now on anti-seizure meds and can not drive for at least 6 months unless I have more of them. Have you heard of this with implant problems? I am home for the summer w/ my son who turns 5 tomorrow and the last thing I would want would be for him to see this happen..... my husband was so very shaken I thought he was going to lose it completely... he thought I was going to die - it was horrible. He is petrified to leave me alone for a minute and he has to get back to work.... my mom came over the last few days and stayed and watched me as well.

What a complete nightmare - I do not remember any of it at all - just have a few scars from it including a massive blow to the back of my head as well as a messed up lip as I guess I bit it during the seizures.

Have any of you ever heard of this in reference to implants victims? they can not come up with a cause and it is the only thing I can think of..... if you think of anything let me know!!

love to all

shari

I hope all is going well your way!!

[Guest guest]

Shari this is awful, I know from personal experience how scary it is to watch, my son had a seizure years ago.

I have heard of women having seizures but thought that it only happened before they got the implants out and if I am correct you have had yours removed for some years.

I am not of any help I know but I wanted to wish you well and hope you find out what triggered this attack.

Love Sue.

[Guest guest]

thanks sue

Yes, my implants have been out for three years.... I have no idea why this is happening now. I am at a loss....

thanks again

shari

[Guest guest]

Just thinking are you on any meds or have you taken something new recently, been more unwell, or is everything as it would normally be? Just wondered as I went to a bar-b-que last week and felt awful for days after because of the smell of the fuel that was used.

Sue

[Guest guest]

One of our silent sisters has had a terrible time with

seizures . . . I'm BCCing her . . .

Her seizures occur when exposed to certain chemicals.

.. . like perfumes and cleaning products.

Things to avoid . . . chlorine, tobacco smoke,

perfumed anything (naturally scented products should

be OK), most cleaning products. There are a host of

" green " products that do a good job. . . Automobile

exhaust (turn on the recycling function on your car

before you get into traffic or a heavily polluted

area) . .

Also . . . get checked for Celiac disease . . .

Please let us know how you're doing on a regular

basis! . . . The last time we heard from you, you

sounded like you were getting your life back!

There are some detox foot pads that may help . . . do

a websearch for " detox foot pads " . . . I'm favoring

Acupeds and Body Pure . . . but there are others.

Hugs and prayers,

Rogene

[Guest guest]

I don't want to sound like a stuffed shirt, but if I were having seizures I

would get my tuckus

to a neurologist PRONTO.

>

> Just thinking are you on any meds or have you taken something new recently,

> been more unwell, or is everything as it would normally be? Just wondered as I

> went to a bar-b-que last week and felt awful for days after because of the

> smell of the fuel that was used.

>

> Sue

>

[Guest guest]

Shari

Wow that is really scary. I can see why your husband is so

concerned. I just want to say that you are in my thoughts and

prayers. Had you been doing well prior to the seizures? Have you

been using the sauna alot? Or doing chelation therapy or taking

some supplements? If so, I kinda wonder if you displaced some heavy

metals or other toxins and your body couldn't eliminate them. I

know that people with lupus can have seizures. Many times you never

find the reason. Some people have gotten seizures from aspartame.

Do you use that? Hopefully they will never happen again.

Hugs,Kathy

>

>

>

> Hello all

>

>

> I had a few questions for all when you get a minute..... sorry I

have not

> been in touch lately, I have been ill. Last Sunday I had a series

of seizures

> - pretty violent ones from what my hubby said. Luckily all but

one happened

> at the doctor, which called an ambulance and I was hospitalized

for 3 days.

> On the last one I stopped breathing which has my hubby totally

freaked out

> as he saw the whole thing including them bringing me back..... I

am very

> scared and have no idea why this happened. They ran a ton of

tests at the

> hospital and could not explain them. I am now on anti-seizure

meds and can not

> drive for at least 6 months unless I have more of them. Have you

heard of this

> with implant problems? I am home for the summer w/ my son who

turns 5

> tomorrow and the last thing I would want would be for him to see

this happen.....

> my husband was so very shaken I thought he was going to lose it

completely...

> he thought I was going to die - it was horrible. He is petrified

to leave

> me alone for a minute and he has to get back to work.... my mom

came over the

> last few days and stayed and watched me as well.

>

> What a complete nightmare - I do not remember any of it at all -

just have a

> few scars from it including a massive blow to the back of my head

as well as

> a messed up lip as I guess I bit it during the seizures.

>

> Have any of you ever heard of this in reference to implants

victims? they

> can not come up with a cause and it is the only thing I can think

of..... if

> you think of anything let me know!!

>

> love to all

>

> shari

>

> I hope all is going well your way!!

>

[Guest guest]

Curtis and ,

Sorry I took so long to post on this, but we have been though the ringer

with seizures at our house (status epilepticus, etc.) ... 3 different

seizure types identified via EEG and they thought maybe even a fourth. I

think the treatments were a large part of beginning to get our son

back. One point to note....we thought that Valtrex might have exacerbated

his seizures so Dr. G switched him to Famvir and never wanted to go back to

Valtrex for this particular child (now he's on Zovirax and doing well).

By the way, Lennox-Gastaut Syndrome (a severe classification of epilepsy) is

associated with autistic symptoms. This is what we were told our son might

have... when we told Dr. G this, he was un-phased in his hopes to help our

child, told us that children weren't supposed to disintegrate ad charged

right on. We have gone from not being able to leave the house for fear of

his getting sick (any illness made his seizures go from horrific to worse),

to a child attending regular second grade and getting high marks in all

things academic (but the social skills need work!). This is a child who at

age three lost his ability to speak and was so severely affected that we

were told by a speech therapist that he presented like a stroke victim.

We have just made it 2 years without seizures and although the EEG sill does

not look " normal " , our little guy is doing really well. The seizures

started when he was three, it took two years to get them under control (he

was 5 when they stopped), and now he is seven. He is still on Lamictal.

If you want to e-mail me privately, feel free to do so.

Caroline

> From: Curtis and Hackler <thehacks@...>

> Reply-< >

> Date: Wed, 03 Oct 2007 15:44:49 -0700 (PDT)

> < >

> Subject: Re: welcome back Sharrill! & question about seizures

>

> I'm interested in hearing how Sharrill's child(ren)

> are doing and a little history of their working with

> Dr. Goldberg, if you wouldn't mind sharing!

>

> Also... have any of your children had seizures? My

> son has had 2 short ones, but recently had a severe

> one and had respiratory failure... long story short,

> we were in Ped ICU for 7 days & reg. ped floor for 2

> more. I was curious if there were others that had

> gone thru this & if so, how are your children doing

> now & was anything significant found or correlated to

> the " A " word?

[Guest guest]

This is so awesome! Jerri

---- Original Message ----

From: sfglover@...

Subject: Re: Seizures

Date: Mon, 08 Oct 2007 09:00:33 -0400

>Curtis and ,

>

>Sorry I took so long to post on this, but we have been though the

>ringer

>with seizures at our house (status epilepticus, etc.) ... 3 different

>seizure types identified via EEG and they thought maybe even a

>fourth. I

>think the treatments were a large part of beginning to get our

>son

>back. One point to note....we thought that Valtrex might have

>exacerbated

>his seizures so Dr. G switched him to Famvir and never wanted to go

>back to

>Valtrex for this particular child (now he's on Zovirax and doing

>well).

>

>By the way, Lennox-Gastaut Syndrome (a severe classification of

>epilepsy) is

>associated with autistic symptoms. This is what we were told our son

>might

>have... when we told Dr. G this, he was un-phased in his hopes to

>help our

>child, told us that children weren't supposed to disintegrate ad

>charged

>right on. We have gone from not being able to leave the house for

>fear of

>his getting sick (any illness made his seizures go from horrific to

>worse),

>to a child attending regular second grade and getting high marks in

>all

>things academic (but the social skills need work!). This is a child

>who at

>age three lost his ability to speak and was so severely affected that

>we

>were told by a speech therapist that he presented like a stroke

>victim.

>

>We have just made it 2 years without seizures and although the EEG

>sill does

>not look " normal " , our little guy is doing really well. The seizures

>started when he was three, it took two years to get them under

>control (he

>was 5 when they stopped), and now he is seven. He is still on

>Lamictal.

>

>If you want to e-mail me privately, feel free to do so.

>

>Caroline

>

>

>

>> From: Curtis and Hackler <thehacks@...>

>> Reply-< >

>> Date: Wed, 03 Oct 2007 15:44:49 -0700 (PDT)

>> < >

>> Subject: Re: welcome back Sharrill! & question about

>seizures

>>

>> I'm interested in hearing how Sharrill's child(ren)

>> are doing and a little history of their working with

>> Dr. Goldberg, if you wouldn't mind sharing!

>>

>> Also... have any of your children had seizures? My

>> son has had 2 short ones, but recently had a severe

>> one and had respiratory failure... long story short,

>> we were in Ped ICU for 7 days & reg. ped floor for 2

>> more. I was curious if there were others that had

>> gone thru this & if so, how are your children doing

>> now & was anything significant found or correlated to

>> the " A " word?

>

>