Re: Autism and Epilepsy...HELP!!!

[Guest guest]

, Abby has seizures too. She has had them since she was 4. She is

now 9. How frequently does your daughter have them? Abby has partial

complex/focal seizures. Feel free to email me off list if you would like. Where

are you

from?

Pennie

Abby's Mom

[Guest guest]

We controlled Abby's with just the use of a chiropractor for almost 2 years.

Now she only takes 50 mg of Dilantin and sees the chiropractor. She does

well on it, and although I dont like the idea of meds. It beats having to call

EMS each time. Abby's shortest seizure has been 12 minutes and the longest is

about 50.

I would recommend that your school contact the local epilepsy foundation and

they will come and train staff of what to do during a seizure. Make sure you

put that in her IEP.

Pennie

Abby's Mom

[Guest guest]

Is she gluten free? There are thought to be links between gluten

and seizures...

>

> Hi...its been so long since I have been on-line. We have been

busy

> working with our School District and Jadyn's health. They have

> really been great and Jadyn will be in a full-day ABA based

program

> starting in October. I am surprised how smoothly everything is

> going....maybe its the help of my lawyer from the start??

>

> Anyway, we were at CHOP again this week and it looks like Jadyn

has

> not only autism, but epilepsy also. Does anyone have any

experience

> with non-convulsive seizures? HELP! We are going back for more

> EEGS and then possibly video monitoring. The neurologist told me

> that epilepsy is common in autistic children but I have not met

> anyone yet who can help me or provide insight.

>

> If anyone can help me or guide me, my stress level is at the max.

> Just when I thought I had it all figured out and the transition to

> school is to take place, now this.....I am scared and frustrated

at

> the same time. I am just thankful we are trying to figure out how

> to deal with this now before the seizures get worse.

>

> Any words of wisdom are welcome.......HELP!!! thanks,michelle

>

[Guest guest]

My knowledge of epilepsy is limited to having witnessed it in my pet

St. Bernard growing up so I can't give you much personal advise. I

found a resource on one of my favorite autism sites that might have

some information that can be helpful: www.tacanow.com/seizures.htm

I am curious, is Jadyn a girl? My autistic son is named Jadon. I

have met 3 other Jadon's before and surprisingly they all are

autistic. What is it about that name?

>

> Hi...its been so long since I have been on-line. We have been busy

> working with our School District and Jadyn's health. They have

> really been great and Jadyn will be in a full-day ABA based program

> starting in October. I am surprised how smoothly everything is

> going....maybe its the help of my lawyer from the start??

>

> Anyway, we were at CHOP again this week and it looks like Jadyn has

> not only autism, but epilepsy also. Does anyone have any

experience

> with non-convulsive seizures? HELP! We are going back for more

> EEGS and then possibly video monitoring. The neurologist told me

> that epilepsy is common in autistic children but I have not met

> anyone yet who can help me or provide insight.

>

> If anyone can help me or guide me, my stress level is at the max.

> Just when I thought I had it all figured out and the transition to

> school is to take place, now this.....I am scared and frustrated at

> the same time. I am just thankful we are trying to figure out how

> to deal with this now before the seizures get worse.

>

> Any words of wisdom are welcome.......HELP!!! thanks,michelle

>

[Guest guest]

Is Jadyn having absence, myoclonic, or partial-complex

seizures? Those are the main types of non-convulsive

seizures (aside from drop seizures, and believe me,

you'd NOTICE those).

First thing to do to help keep those from getting

worse is talk to a neurologist about appropriate

medication. I know no one likes drugging their kid but

seizures beget seizures, and they get longer & more

severe with time. There are a couple amino acids that

help but they're no substitute for talking it over

with a neuro and getting a script. Don't even read the

side effects if you freak out about side effects, not

till she's clearly doing fine on it. Anything that's

of special note the doc WILL tell you to watch for.

And the kind of seizure she's having will determine

the most appropriate medication.

If it's obvious on EEG that she's having seizures,

VEEG is just mean IMHO. But I HATE VEEGs so take that

with a grain of salt.

Kassiane

--- jadyn_waiser wrote:

> Hi...its been so long since I have been on-line. We

> have been busy

> working with our School District and Jadyn's health.

> They have

> really been great and Jadyn will be in a full-day

> ABA based program

> starting in October. I am surprised how smoothly

> everything is

> going....maybe its the help of my lawyer from the

> start??

>

> Anyway, we were at CHOP again this week and it looks

> like Jadyn has

> not only autism, but epilepsy also. Does anyone

> have any experience

> with non-convulsive seizures? HELP! We are going

> back for more

> EEGS and then possibly video monitoring. The

> neurologist told me

> that epilepsy is common in autistic children but I

> have not met

> anyone yet who can help me or provide insight.

>

> If anyone can help me or guide me, my stress level

> is at the max.

> Just when I thought I had it all figured out and the

> transition to

> school is to take place, now this.....I am scared

> and frustrated at

> the same time. I am just thankful we are trying to

> figure out how

> to deal with this now before the seizures get worse.

>

> Any words of wisdom are welcome.......HELP!!!

> thanks,michelle

>

>

>

>

>

__________________________________________________

[Guest guest]

Thanks for your insight...She is having absence seizures..lasting 8

seconds to 45 seconds...Anything else you can recommend?? I really

don't want to do meds unless we have to....I am really worried about

the side effects (pharmaceutical industry trained)....

Any other suggestions? How do they handle this in the school???

>

> > Hi...its been so long since I have been on-line. We

> > have been busy

> > working with our School District and Jadyn's health.

> > They have

> > really been great and Jadyn will be in a full-day

> > ABA based program

> > starting in October. I am surprised how smoothly

> > everything is

> > going....maybe its the help of my lawyer from the

> > start??

> >

> > Anyway, we were at CHOP again this week and it looks

> > like Jadyn has

> > not only autism, but epilepsy also. Does anyone

> > have any experience

> > with non-convulsive seizures? HELP! We are going

> > back for more

> > EEGS and then possibly video monitoring. The

> > neurologist told me

> > that epilepsy is common in autistic children but I

> > have not met

> > anyone yet who can help me or provide insight.

> >

> > If anyone can help me or guide me, my stress level

> > is at the max.

> > Just when I thought I had it all figured out and the

> > transition to

> > school is to take place, now this.....I am scared

> > and frustrated at

> > the same time. I am just thankful we are trying to

> > figure out how

> > to deal with this now before the seizures get worse.

> >

> > Any words of wisdom are welcome.......HELP!!!

> > thanks,michelle

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Thanks for the great insight...I am going to definately put that in

the IEP....I would never have thought of it.....

>

> We controlled Abby's with just the use of a chiropractor for

almost 2 years.

> Now she only takes 50 mg of Dilantin and sees the chiropractor.

She does

> well on it, and although I dont like the idea of meds. It beats

having to call

> EMS each time. Abby's shortest seizure has been 12 minutes and

the longest is

> about 50.

>

> I would recommend that your school contact the local epilepsy

foundation and

> they will come and train staff of what to do during a seizure.

Make sure you

> put that in her IEP.

>

> Pennie

> Abby's Mom

>

>

>

[Guest guest]

Absence seizures your choice are drugs or drugs. Or

kindling, which is worse than drugs.

Keppra is pretty benign. Tegretol and Trileptal are

out. Topamax is a maybe. Zonegran is in there but it

can be really really wrong for some people. Lamictal

is good for absences too but it's got a warning for

rash...they'll probably offer you Depakote/Depakene

though. It has icky side effects but has a proven

track record. There's a couple meds specificially for

absences, too, but I dont know what they are called,

name-wise.

The amino acids that work IN CONJUNCTION with the meds

are taurine and carnitine but they aren't a substitute

for a prescription.

Kassiane

--- jadyn_waiser wrote:

> Thanks for your insight...She is having absence

> seizures..lasting 8

> seconds to 45 seconds...Anything else you can

> recommend?? I really

> don't want to do meds unless we have to....I am

> really worried about

> the side effects (pharmaceutical industry

> trained)....

>

> Any other suggestions? How do they handle this in

> the school???

>

>

> >

> > > Hi...its been so long since I have been on-line.

> We

> > > have been busy

> > > working with our School District and Jadyn's

> health.

> > > They have

> > > really been great and Jadyn will be in a

> full-day

> > > ABA based program

> > > starting in October. I am surprised how

> smoothly

> > > everything is

> > > going....maybe its the help of my lawyer from

> the

> > > start??

> > >

> > > Anyway, we were at CHOP again this week and it

> looks

> > > like Jadyn has

> > > not only autism, but epilepsy also. Does anyone

> > > have any experience

> > > with non-convulsive seizures? HELP! We are

> going

> > > back for more

> > > EEGS and then possibly video monitoring. The

> > > neurologist told me

> > > that epilepsy is common in autistic children but

> I

> > > have not met

> > > anyone yet who can help me or provide insight.

> > >

> > > If anyone can help me or guide me, my stress

> level

> > > is at the max.

> > > Just when I thought I had it all figured out and

> the

> > > transition to

> > > school is to take place, now this.....I am

> scared

> > > and frustrated at

> > > the same time. I am just thankful we are trying

> to

> > > figure out how

> > > to deal with this now before the seizures get

> worse.

> > >

> > > Any words of wisdom are welcome.......HELP!!!

> > > thanks,michelle

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

>

Are you sure your not talking about me? I haven't posted in a while

too and my son just started to have these absent seizures too. He

was started on Depakote on Tuesday. So far so good no seizures since.

The MRI also discovered a problem with his brain. The position of

the Cerebellum is too low. This may cause the seizures although he

said it's not likely in my son's case. If the brain presses on the

spinal cord this would cause problems.

They will monitor it every 6 months with MRI's.

I'm not a professional or anything but my ped. said to give him the

meds as he will loose out on learning if he continues to have

seizures. My son is 3 1/2. He did have one at 11 months. It was a

convulsive one Complex Partical Seizure I think they called it. No

siezures until just recently.

Good luck.

Hi...its been so long since I have been on-line. We have been busy

> working with our School District and Jadyn's health. They have

> really been great and Jadyn will be in a full-day ABA based program

> starting in October. I am surprised how smoothly everything is

> going....maybe its the help of my lawyer from the start??

>

> Anyway, we were at CHOP again this week and it looks like Jadyn has

> not only autism, but epilepsy also. Does anyone have any

experience

> with non-convulsive seizures? HELP! We are going back for more

> EEGS and then possibly video monitoring. The neurologist told me

> that epilepsy is common in autistic children but I have not met

> anyone yet who can help me or provide insight.

>

> If anyone can help me or guide me, my stress level is at the max.

> Just when I thought I had it all figured out and the transition to

> school is to take place, now this.....I am scared and frustrated at

> the same time. I am just thankful we are trying to figure out how

> to deal with this now before the seizures get worse.

>

> Any words of wisdom are welcome.......HELP!!! thanks,michelle

>

[Guest guest]

Hey --Wow..we do have alot in common--Jadyn was 15 months when

she had her 1st petite mal...it was awful...then the absence started

after that...and we waited, and now they are worse....My dr said the

same thing about the learning issue, as Jadyn is almost 3 now. We

are doing the sleep deprived EEG at CHOP in 3 weeks to learn more

then a VEEG and an MRI...never seems to end...

Maybe we can help each other...

michelle

> >

> Are you sure your not talking about me? I haven't posted in a

while

> too and my son just started to have these absent seizures too. He

> was started on Depakote on Tuesday. So far so good no seizures

since.

>

> The MRI also discovered a problem with his brain. The position of

> the Cerebellum is too low. This may cause the seizures although

he

> said it's not likely in my son's case. If the brain presses on

the

> spinal cord this would cause problems.

>

> They will monitor it every 6 months with MRI's.

>

> I'm not a professional or anything but my ped. said to give him

the

> meds as he will loose out on learning if he continues to have

> seizures. My son is 3 1/2. He did have one at 11 months. It was

a

> convulsive one Complex Partical Seizure I think they called it.

No

> siezures until just recently.

>

> Good luck.

>

>

>

>

> Hi...its been so long since I have been on-line. We have been

busy

> > working with our School District and Jadyn's health. They have

> > really been great and Jadyn will be in a full-day ABA based

program

> > starting in October. I am surprised how smoothly everything is

> > going....maybe its the help of my lawyer from the start??

> >

> > Anyway, we were at CHOP again this week and it looks like Jadyn

has

> > not only autism, but epilepsy also. Does anyone have any

> experience

> > with non-convulsive seizures? HELP! We are going back for more

> > EEGS and then possibly video monitoring. The neurologist told

me

> > that epilepsy is common in autistic children but I have not met

> > anyone yet who can help me or provide insight.

> >

> > If anyone can help me or guide me, my stress level is at the

max.

> > Just when I thought I had it all figured out and the transition

to

> > school is to take place, now this.....I am scared and frustrated

at

> > the same time. I am just thankful we are trying to figure out

how

> > to deal with this now before the seizures get worse.

> >

> > Any words of wisdom are welcome.......HELP!!! thanks,michelle

> >

>

[Guest guest]

My daughters have both had seizures. The doctors

refused to believe that they were seizures either.

Chantelle began having them when she was an infant

about 7 or 8 months, but only when she would really

scream and cry, they seemed to be tantrum induced.

They were to the point that no matter what I did, she

would scream till her eyes rolled back in her head and

she passed out for a few seconds, until I blew in her

little mouth and then she would gasp for air and come

to, but then fall asleep afterward for hours.

I have told the doctors about this many times, and

they seem to think it is no big deal.

Then, around 2.5 age there were no more obviouse

seizures. When we took in a foster daughter when she

had just turned four and we had another daughter

by this point who was almost 2 and I was just

pregnant with my number 3 baby the stress became a lot

for her. She did not like us having our foster

daughter Analesia, because Leesie (we called her and

pronounced {Lee C})was very tempramental. SHe was just

a couple months older than , she had just turned

2. I loved her so much, she was such a beautiful

little girl. I miss her so much sometimes. But it was

too hard on Chantelle. Leesie would scream all day

long some days and she didn't want to walk, I had to

carry her many times and she didn't talk much either

and was very jealous of any one else getting my

attention. I tried to give her as much or more

attention than my girls, because I knew the horrible

things she had been through, but if I ever held anyone

else she would scream and come punch them and me and

kick and bite. I could never even use the bathroom,

because she would hurt my girls very badly while I was

in the bathroom because she was mad that I was gone

for a second. I have horrible pregnancies and they get

so bad I can barely walk and I just could not handle

it all anymore at that point in my life. She used to

scream so much when we tried to put her to bed, that

she would throw up everywhere. This screaming and

throwing up scared Chantelle so bad, that she began

having seizures again, or so it seemed.

She would begin to shake and scream and hold her

breath and her eyes would roll back in her head and

she would shake and convuldge and then pass out. She

would come back to as soon as I blew in her mouth like

I had when she was little, but it terrified us. We

insisted this time around that the doctors run an EEG.

They finally did, but they saw nothing and they ran

two other ones and said that their was nothing, so we

did not know what else to do.

After Leesie bit 's arm one day when I was in

the bathroom throwing up with my pregnancy and barely

able to walk, I knew that was enough. I loved her so

much, but she bit so hard that we had to take

her to the hospital and it went through the skin and

brused up her arm for 4 weeks afterward. I called my

friend and the fostercare center director and cried

and asked if there was anyway we could just get respit

for a while, but they had none only someone who wanted

a little girl, so I sobbed the rest of the day and

held her until they came and picked her up. It killed

me, but I knew I had to let her go because I was worn

too thin and could not do it anymore.

Chantelle had been having these seizures up to 7 times

a day and some lasting 15 to 20 minutes, and only 2

weeks after Leesie had left us they stopped. So, I

don't know any more about what kind of seizures that

she was having. I call them Tantrum induced seizures,

but she wasn't always tantruming when they happened.

Well then for about six months we had no seizures. But

then it was 's turn. She began screaming until

the same type of thing happened. She would bite her

tongue hard enough for it to bleed and she would arch

her back up and convuldge and foam at the mouth and it

was terrifying.

This happened maybe two or three times before we left

Sacramento, but the stupid doctors took so long to see

her and they cancelled the appointment we had had made

for 2 months in advance, that we never were able to

get her in before we moved. This was right after our

baby was born and things were stressful again. For the

kids and us. I had a C-Section and couldn't move and

there was a lot of tention that you could feel. My

mother in law came to help out, but she believes in

spanking when I do not, and would swat my kids when I

did not give her permission and try to make them do

things that I did not normally enforce. To me I do not

care if my kids climb on the table or the couch or

even if they jump on the couch. I used to, but I

realized them getting their sensory needs met, which

the jumping on our old ugly springy couch anyhow helps

them feel better and be more calm and the soft sleek

coldness of our dining room table Loves to lay

on and rub her cheek on. So I just don't care to fight

with them about it, when they get back on the second I

take them off anyhow. So regardless of how I feel, my

MIL has Mega OCD and could not handle my kids being on

the table and couch and stuff, so she would spank them

every time they did it. It angered me a lot and I

asked her to stop and told her she would have to leave

if not and was not helping me by doing that. So then

there was tention in that ordeal, so during the 2

weeks that she was there had 3 seizures, but we

were moving before the doctors said they could see

her.

As soon as we moved and all that was over, she was

fine and had no seizures again until 9 months later.

The seizure she had that time was so scarey and

horrible that I had to call 911 and she seized and

convuldged for a half an hour no joke, the EMS people

timed it from the time I called. They had got there

and everything and she was still seizing. She passed

out and they had to use an oxygen mask and everything

and they rushed her to the hospital with me and she

slept with the oxygen mask on while still

spontaneously convuldging for about 20 minutes after

that. It terrified me. SHe then slept at the hospital

for 3 hours before they even got back to her and then

they told me it was a fever induced seizure and there

was no more need for further testing. It angered me a

lot. Because I know she had had a fever of 104 earlier

that day, but I had given her Ibuprophin 2 hours

before that and had actually just taken her temp again

and it was only 99. I told them about about the other

seizures, but they didn't care. I got her a different

doctor later who is so wonderful and has an Autistic

son himself and he himself has Dislexia and ADHD and

he is very nice. He immediately scheduled an EEG. They

had to sedate her to do the EEG, but they did not find

anything again.

So I guess, since we are on the topic of Seizures.

What does all this mean? The doctors never believed me

and said it was tantrums until they saw for themselves

and had it recorded by the EMTs. Could they really

have seizure problems and have it not show up on the

EEGs? I am nearly posative I had a heart attach once,

and it did not show on an EKG, but they waited for 3

hours after the fact to even hook me up. Is it the

same sort of thing? Would they have to be monitoring

them during the Seizure to see it? or does anyone have

any ideas? I would really like to do something, but

right now I am not getting any options from anyone.

Kassi, do you know about this? Anyone else?

I too have heard that seizures are common, but if so,

then why are the doctors thinking it is impossible for

my girls to have them. I have had many things like

this, where tests did not show up and yet I still had

the thing, so why is it so shocking to them. None of

my kids even showed up as me being pregnant till I was

nearly three months along, even though I sure knew it.

I would be throwing up and sick as a dog and totally

hormonal and know that I was pregnant and then they

would do a Pee test or a Blood test and say nope. They

are so stupid. All three of my kids they would not

even believe I was pregnant until they did an

ultrasound, and said, " Oh my gosh, did you know you

are pregnant? " Stupid morons. Oh well, anyhow, if that

is possible I know that there tests can't always be

acurate. In that case there was an ultrasound to turn

to, in this case are there other tests or options?

Please let me know what you know or what you guys

think. Thanks, Esther

--- jadyn_waiser wrote:

> Hey --Wow..we do have alot in common--Jadyn

> was 15 months when

> she had her 1st petite mal...it was awful...then the

> absence started

> after that...and we waited, and now they are

> worse....My dr said the

> same thing about the learning issue, as Jadyn is

> almost 3 now. We

> are doing the sleep deprived EEG at CHOP in 3 weeks

> to learn more

> then a VEEG and an MRI...never seems to end...

>

> Maybe we can help each other...

> michelle

>

>

> > >

> > Are you sure your not talking about me? I haven't

> posted in a

> while

> > too and my son just started to have these absent

> seizures too. He

> > was started on Depakote on Tuesday. So far so

> good no seizures

> since.

> >

> > The MRI also discovered a problem with his brain.

> The position of

> > the Cerebellum is too low. This may cause the

> seizures although

> he

> > said it's not likely in my son's case. If the

> brain presses on

> the

> > spinal cord this would cause problems.

> >

> > They will monitor it every 6 months with MRI's.

> >

> > I'm not a professional or anything but my ped.

> said to give him

> the

> > meds as he will loose out on learning if he

> continues to have

> > seizures. My son is 3 1/2. He did have one at 11

> months. It was

> a

> > convulsive one Complex Partical Seizure I think

> they called it.

> No

> > siezures until just recently.

> >

> > Good luck.

> >

> >

> >

> >

> > Hi...its been so long since I have been on-line.

> We have been

> busy

> > > working with our School District and Jadyn's

> health. They have

> > > really been great and Jadyn will be in a

> full-day ABA based

> program

> > > starting in October. I am surprised how

> smoothly everything is

> > > going....maybe its the help of my lawyer from

> the start??

> > >

> > > Anyway, we were at CHOP again this week and it

> looks like Jadyn

> has

> > > not only autism, but epilepsy also. Does anyone

> have any

> > experience

> > > with non-convulsive seizures? HELP! We are

> going back for more

> > > EEGS and then possibly video monitoring. The

> neurologist told

> me

> > > that epilepsy is common in autistic children but

> I have not met

> > > anyone yet who can help me or provide insight.

> > >

> > > If anyone can help me or guide me, my stress

> level is at the

> max.

> > > Just when I thought I had it all figured out and

> the transition

> to

> > > school is to take place, now this.....I am

> scared and frustrated

> at

> > > the same time. I am just thankful we are trying

> to figure out

> how

> > > to deal with this now before the seizures get

> worse.

> > >

> > > Any words of wisdom are welcome.......HELP!!!

> thanks,michelle

> > >

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

If the seizure activity is really deep it won't always

show up. and it's possible to have a totally (or

nearly totally) clean EEG in between seizures.

Neurologists don't like to believe people with other

'brain cooties' can also have seizures because it

makes THEIR life more difficult. Neurologists are

usually jerks.

Kassianee

--- Esther wrote:

> They

> had to sedate her to do the EEG, but they did not

> find

> anything again.

> So I guess, since we are on the topic of Seizures.

> What does all this mean? The doctors never believed

> me

> and said it was tantrums until they saw for

> themselves

> and had it recorded by the EMTs. Could they really

> have seizure problems and have it not show up on the

> EEGs? I am nearly posative I had a heart attach

> once,

> and it did not show on an EKG, but they waited for 3

> hours after the fact to even hook me up. Is it the

> same sort of thing? Would they have to be monitoring

> them during the Seizure to see it? or does anyone

> have

> any ideas? I would really like to do something, but

> right now I am not getting any options from anyone.

> Kassi, do you know about this? Anyone else?

> I too have heard that seizures are common, but if

> so,

> then why are the doctors thinking it is impossible

> for

> my girls to have them.

>

__________________________________________________

[Guest guest]

But what I am asking is how can I tell and what can I

do if they don't show up? Is there something I could

try? Are there natural or herbal meds I could try

since the docs don't think they need a pescription, is

there something else I should watch for that could

help me detect it? Do you know what kind of seizures

these are or sound like? that sort of thing. If not

that is fine, but just searching for a way to help

prevent tramatic and scarey ones like the one

had to go to the ER for. Thanks for your input Kassi,

Esther

--- Kassi wrote:

> If the seizure activity is really deep it won't

> always

> show up. and it's possible to have a totally (or

> nearly totally) clean EEG in between seizures.

>

> Neurologists don't like to believe people with other

> 'brain cooties' can also have seizures because it

> makes THEIR life more difficult. Neurologists are

> usually jerks.

>

> Kassianee

>

> --- Esther

> wrote:

> > They

> > had to sedate her to do the EEG, but they did not

> > find

> > anything again.

> > So I guess, since we are on the topic of Seizures.

> > What does all this mean? The doctors never

> believed

> > me

> > and said it was tantrums until they saw for

> > themselves

> > and had it recorded by the EMTs. Could they really

> > have seizure problems and have it not show up on

> the

> > EEGs? I am nearly posative I had a heart attach

> > once,

> > and it did not show on an EKG, but they waited for

> 3

> > hours after the fact to even hook me up. Is it the

> > same sort of thing? Would they have to be

> monitoring

> > them during the Seizure to see it? or does anyone

> > have

> > any ideas? I would really like to do something,

> but

> > right now I am not getting any options from

> anyone.

> > Kassi, do you know about this? Anyone else?

> > I too have heard that seizures are common, but if

> > so,

> > then why are the doctors thinking it is impossible

> > for

> > my girls to have them.

> >

>

>

> __________________________________________________

>

[Guest guest]

I have to admit that I really love Abby's neurologist. She goes to Dr.

Gupta. Dr. Gupta listens and has always realized that Abby reacts in a different

way to medications then many of her other patients do. She was even willing to

do celiac testing to see if the seizures were from that. I like her because

she is always willing to listen, and she treats Abby with a great deal of

respect.

Pennie

Abby's Mom

[Guest guest]

Hey Kass, most are jerks. Unless of course they are your Clay guy.LOL. I

still think that you missed the boat with that one.

Pennie

Abby's Mom

[Guest guest]

Amen to that! I'd like to meet one who isn't, that's for sure.

Debi

Neurologists are

> usually jerks.

>

> Kassianee

>

>

[Guest guest]

That names sounds familiar. Is she known to work with autism patients?

Maybe I just remember you talking about her before.

Debi

-

[Guest guest]

Unfortunately the ones least likely to show up are

ones that are going to be blamed on " just being

autistic " (parts of the temporal and frontal lobes) or

on tantrums (deeper brain structures, and they really

DO look like tantrums but that isn't the point).

If the doctor is of no help, l-acetyl-carnitine and

taurine are 2 amino acids that are pretty good

add-ons, at least. They're 2 substances that are in

the body anyway, I've had no trouble with them &

they're part of my (big and huge) epilepsy puzzle.

Kassiane

--- Esther wrote:

> But what I am asking is how can I tell and what can

> I

> do if they don't show up? Is there something I could

> try? Are there natural or herbal meds I could try

> since the docs don't think they need a pescription,

> is

> there something else I should watch for that could

> help me detect it? Do you know what kind of seizures

> these are or sound like? that sort of thing. If not

> that is fine, but just searching for a way to help

> prevent tramatic and scarey ones like the one

> had to go to the ER for. Thanks for your input

> Kassi,

> Esther

>

> --- Kassi wrote:

>

> > If the seizure activity is really deep it won't

> > always

> > show up. and it's possible to have a totally (or

> > nearly totally) clean EEG in between seizures.

> >

> > Neurologists don't like to believe people with

> other

> > 'brain cooties' can also have seizures because it

> > makes THEIR life more difficult. Neurologists are

> > usually jerks.

> >

> > Kassianee

> >

> > --- Esther

> > wrote:

> > > They

> > > had to sedate her to do the EEG, but they did

> not

> > > find

> > > anything again.

> > > So I guess, since we are on the topic of

> Seizures.

> > > What does all this mean? The doctors never

> > believed

> > > me

> > > and said it was tantrums until they saw for

> > > themselves

> > > and had it recorded by the EMTs. Could they

> really

> > > have seizure problems and have it not show up on

> > the

> > > EEGs? I am nearly posative I had a heart attach

> > > once,

> > > and it did not show on an EKG, but they waited

> for

> > 3

> > > hours after the fact to even hook me up. Is it

> the

> > > same sort of thing? Would they have to be

> > monitoring

> > > them during the Seizure to see it? or does

> anyone

> > > have

> > > any ideas? I would really like to do something,

> > but

> > > right now I am not getting any options from

> > anyone.

> > > Kassi, do you know about this? Anyone else?

> > > I too have heard that seizures are common, but

> if

> > > so,

> > > then why are the doctors thinking it is

> impossible

> > > for

> > > my girls to have them.

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

I know of ONE. In the whole United States. In the

heckhole of Peoria, Illinois.

All the others I've met are...GGAAAHHHHH!!

Kassiane

--- Debi wrote:

> Amen to that! I'd like to meet one who isn't, that's

> for sure.

>

> Debi

>

> Neurologists are

> > usually jerks.

> >

> > Kassianee

> >

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

--- Ploveabby@... wrote:

> Hey Kass, most are jerks. Unless of course they are

> your Clay guy.LOL. I

> still think that you missed the boat with that one.

>

Yeah I probably did...but I was SMARTER than him and

it was embarrassing!

Kassiane

__________________________________________________

[Guest guest]

I have heard people say that about her, but she has never been that way with

us. Now her office staff leaves much to be desired.

Pennie

Abby's Mom

[Guest guest]

Hello,

I'm new to this board, but not new to Autism.

We have a fairly decent neurologist here in Vermont. She's very young and

not too arrogant (yet).

Can I pass along any info?

Doreen Giannelli

Re: Re: Autism and Epilepsy...HELP!!!

I know of ONE. In the whole United States. In the

heckhole of Peoria, Illinois.

All the others I've met are...GGAAAHHHHH!!

Kassiane

--- Debi <fightingautism@ <mailto:fightingautism%40yahoo.com> yahoo.com>

wrote:

> Amen to that! I'd like to meet one who isn't, that's

> for sure.

>

> Debi

>

> Neurologists are

> > usually jerks.

> >

> > Kassianee

> >

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

Kassi what is of the name of hte one you know of. In Ohio much go to

a Dr. Chez? or somethings of this from out of state in illinois or

indiana? not sure but here is of the best ever in areas of seizures.

He will find what most cannot find.

Sondra

In Autism_in_Girls , Kassi

wrote:

>

> I know of ONE. In the whole United States. In the

> heckhole of Peoria, Illinois.

>

> All the others I've met are...GGAAAHHHHH!!

>

> Kassiane

>

> --- Debi wrote:

>

> > Amen to that! I'd like to meet one who isn't, that's

> > for sure.

> >

> > Debi

> >

> > Neurologists are

> > > usually jerks.

> > >

> > > Kassianee

> > >

> > >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

We go to Dr. Gupta as well...Ive been to her once and Overall I wasnt

impressed...I felt very rushed...so I hope it was just that day and that shes

not always that way.

Re: Re: Autism and Epilepsy...HELP!!!

I have to admit that I really love Abby's neurologist. She goes to Dr.

Gupta. Dr. Gupta listens and has always realized that Abby reacts in a

different

way to medications then many of her other patients do. She was even willing to

do celiac testing to see if the seizures were from that. I like her because

she is always willing to listen, and she treats Abby with a great deal of

respect.

Pennie

Abby's Mom

[Guest guest]

yea no kidding...I tried for 3 weeks to get rissa's diagnossis faxed to her ped.

I was much less than impressed

Re: Re: Autism and Epilepsy...HELP!!!

I have heard people say that about her, but she has never been that way with

us. Now her office staff leaves much to be desired.

Pennie

Abby's Mom