Re: Need help....Ebony (long)

[Guest guest]

I would have another sleep deprived eeg as soon as you can.

The med alterations could have triggered some seizure activity.

kandie

Kandie and (9 years)

* 's website: <A

HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A>

*

[Guest guest]

Well, seizure CAN be falling down on the floor and biting tongues and all

that dramatic stuff, but they aren't ALL like that. I had seizures since I

was 17 and don't lose conciousness ever with them. It sounds like petit mal

seizures to me.

kandie

Kandie and (9 years)

* 's website: <A

HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A>

*

[Guest guest]

That's what I think, too. I just wanted some

verification that this is what it sounds like. To me,

seizures are when people fall on the floor bucking and

biting their tongues off like in the movies.

Thanks, Kandie

Tamara

--- kandiedem@... wrote:

> I would have another sleep deprived eeg as soon as

> you can.

> The med alterations could have triggered some

> seizure activity.

>

> kandie

>

> Kandie and (9 years)

> * 's website: <A

>

HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A>

>

> *

>

__________________________________________________

[Guest guest]

tamara, you should read this. it explains about all the different kinds of

seizures- http://www.paceusa.org/indexframe.html

Autism is not the end of the World. . . . just the beginning of a new one. -

Sally Meyer

[Guest guest]

, thanks. I just checked it out a little bit and

one the the definitions was for an absense seizure.

It says that it is very brief, last only a few

seconds, and looks like a blank stare or daydreaming.

It begins and ends suddenly. That sounds too familiar

to be comfortable.

I will call the doctor on Monday.

Tamara

--- gina muollo wrote:

> tamara, you should read this. it explains about all

> the different kinds of

> seizures- http://www.paceusa.org/indexframe.html

>

> Autism is not the end of the World. . . . just the

> beginning of a new one. -

> Sally Meyer

>

>

>

__________________________________________________

[Guest guest]

ok, there's another thing. i don't want to frighten you, but there is a

possibility of a condition known as aphasia. it is also sometimes known as

landau-kleffner syndrome. here are two sites for you to look at, just in

case...

http://www.nidcd.nih.gov/health/pubs_vsl/landklfs.htm

http://www.aphasia.org/NAAfactsheet.html

Autism is not the end of the World. . . . just the beginning of a new one. -

Sally Meyer

[Guest guest]

ok. I looked at that and I think that it is unlikely

that it is that. She was tested for seizures before

and it came out fine and she never developed normally

and then lost language. She never got any to begin

with. But thanks for sending the links. Anything I

know about this stuff will be good.

Do your kids have seizures? I can't remember you

posting about them before.

Tamara

--- gina muollo wrote:

> ok, there's another thing. i don't want to frighten

> you, but there is a

> possibility of a condition known as aphasia. it is

> also sometimes known as

> landau-kleffner syndrome. here are two sites for you

> to look at, just in

> case...

>

http://www.nidcd.nih.gov/health/pubs_vsl/landklfs.htm

> http://www.aphasia.org/NAAfactsheet.html

>

> Autism is not the end of the World. . . . just the

> beginning of a new one. -

> Sally Meyer

>

>

>

__________________________________________________

[Guest guest]

no, but once when kailey was 4, she COMPLETELY lost any speech she had. for

4 whole months she didn't make a single sound. the neuro gave her an EEG to

test for aphasia, but it turned out fine. she had also previously had a few

other EEGs, including a 4 day video EEG. they all came out fine. anyway,

there was never any explanation for why kailey became silent and there was

never any explanation for why her silence ended. just one of those fun

baffling autistic things, i guess.

Autism is not the end of the World. . . . just the beginning of a new one. -

Sally Meyer

[Guest guest]

Hmmmm....that is weird. But she just starting talking

again one day. Very strange, indeed.

Tamara

--- gina muollo wrote:

> no, but once when kailey was 4, she COMPLETELY lost

> any speech she had. for

> 4 whole months she didn't make a single sound. the

> neuro gave her an EEG to

> test for aphasia, but it turned out fine. she had

> also previously had a few

> other EEGs, including a 4 day video EEG. they all

> came out fine. anyway,

> there was never any explanation for why kailey

> became silent and there was

> never any explanation for why her silence ended.

> just one of those fun

> baffling autistic things, i guess.

>

> Autism is not the end of the World. . . . just the

> beginning of a new one. -

> Sally Meyer

>

>

>

__________________________________________________

[Guest guest]

has done this twice. Both times were in the very very beginning before

she was diagnoised. Both times she was having problems processing something

with her sensory system. (Of course I didn't know it then). Once was when

she had gotton some pine tar on her hands and the other was too much peanut

butter and it stuck to the top of her mouth. Both times I was afraid she was

chocking.

I don't know if this will help you or not. In hindsight do you think there

was something that her sensory system was having problems with?

G

[Guest guest]

I agree that it sounds like a seizure and may be related to the meds.

Possibly - hopefully - a side effect of the med. The language loss could be

due to anything - sensory issues related or not related to the med, ditto

seizures or whatever is happening.

From what I understand - this is what my ped told me - a normal EEG is NOT

conclusive that there is no seizure activity. It just means the child did

not have a seizure while the EEG was running. Mikey had a couple of these

episodes & we considered doing one but then he did not have any more so...I

asked about putting him on a seizure med to see what happened & she said

that is very common. So personally I choose to skip the EEG.

I would definitely call the doc monday.

I will hope for you that taking her off this med will make these episodes go

away, and that you can find a different med to help her.

-Sara.

[Guest guest]

So did you try a seizure med without doing an EEG? I

was thinking about this last night while trying to go

to sleep and I just can't think how this will go. The

first one we did when she was just two years old. She

is much bigger now and I can't see her letting them

put all the wires on her head without sedation. I

will definetely be calling the doc tomorrow though.

Tamara

--- The Byks wrote:

> I agree that it sounds like a seizure and may be

> related to the meds.

> Possibly - hopefully - a side effect of the med.

> The language loss could be

> due to anything - sensory issues related or not

> related to the med, ditto

> seizures or whatever is happening.

>

> From what I understand - this is what my ped told me

> - a normal EEG is NOT

> conclusive that there is no seizure activity. It

> just means the child did

> not have a seizure while the EEG was running. Mikey

> had a couple of these

> episodes & we considered doing one but then he did

> not have any more so...I

> asked about putting him on a seizure med to see what

> happened & she said

> that is very common. So personally I choose to skip

> the EEG.

>

> I would definitely call the doc monday.

>

> I will hope for you that taking her off this med

> will make these episodes go

> away, and that you can find a different med to help

> her.

>

> -Sara.

>

>

__________________________________________________

[Guest guest]

I don't think so, but who knows. She wasn't eating

anything or touching anything when she did it here at

home...I don't know what she was doing at school. I

don't guess that this was sensory but it would just be

a guess.

Thanks,

Tamara

--- myfishruleWJG@... wrote:

> has done this twice. Both times were in the

> very very beginning before

> she was diagnoised. Both times she was having

> problems processing something

> with her sensory system. (Of course I didn't know

> it then). Once was when

> she had gotton some pine tar on her hands and the

> other was too much peanut

> butter and it stuck to the top of her mouth. Both

> times I was afraid she was

> chocking.

>

> I don't know if this will help you or not. In

> hindsight do you think there

> was something that her sensory system was having

> problems with?

>

> G

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Tamara:

It sure sounds seizure-ish to me. I think you can have one or two clear

EKGs and still have seizures develop. All kids with neurological disorders

are more prone to developing seizures so I would definitely see a

neurologist about it.

It could be a visual stim of some kind too, but I would check it out.

As for the language decrease, well, that is worrisome. Seizures will do

that also, I do believe. What is she currently taking because the

Dextrostat? Supplements? Is she on any special diets?

Salli

[Guest guest]

>>So did you try a seizure med without doing an EEG?

No, because it did not happen again. We are always on the lookout tho & if

it happens again we'll go back. Although I have considered that these

tantrums he's having could be some kind of seizure. We are seeing someone

Wed. about them.

I don't believe an EEG can be done under sedation. And that was another

reason we opted not to go that route -- it just wouldn't happen. You should

have seen the fit he had over the EKG which he only had to be hooked to for

12 seconds...3 people holding him down and him screaming at the top of his

lungs...

Good luck & let us know!!!

-Sara.

[Guest guest]

Thanks, Sue. I will mention that. I do think this

may be related to either the risperdal or the

dextrostat, so I will definetely mention this to the

doctor tomorrow.

Thanks again,

Tamara

--- smgaska wrote:

> Tamara,

> Definately sounds like absence seizures. Have her

> checked again and give

> the Dr. as detailed a description as you can of what

> you observed and how

> many times it's happened. They may need to do a

> longer or video taped EEG

> to get it.

> Also, ask him if it's possible that by giving her

> just an ADD med, it could

> be allowing her to focus more on the autistic

> thoughts in her head (this

> happened to ). This may be why you've seen

> behavior changes for the

> worse in her since starting the med. We had to give

> an antidepressant

> too and then he make great improvements, even at

> very low doses.

> Good luck!

> Sue

>

>

__________________________________________________

[Guest guest]

That's about what I'm picturing for trying to do this

again. About a million people helping me to hold her

down..not fun. I will let you all know what the doc

says tomorrow. She'll probably set us up with a neuro

appt.

Tamara

--- The Byks wrote:

> >>So did you try a seizure med without doing an EEG?

>

> No, because it did not happen again. We are always

> on the lookout tho & if

> it happens again we'll go back. Although I have

> considered that these

> tantrums he's having could be some kind of seizure.

> We are seeing someone

> Wed. about them.

>

> I don't believe an EEG can be done under sedation.

> And that was another

> reason we opted not to go that route -- it just

> wouldn't happen. You should

> have seen the fit he had over the EKG which he only

> had to be hooked to for

> 12 seconds...3 people holding him down and him

> screaming at the top of his

> lungs...

>

> Good luck & let us know!!!

>

> -Sara.

>

>

__________________________________________________

[Guest guest]

Salli, right now she is taking the risperdal, the

dextrostat and the clonidine. I started SNT again on

Thursday because of the language decrease. She is not

on any diets. We tried the gfcf but saw no changes

with or without it.

It sounds seizureish to me too. I just can't imagine

her cooperating enough to get the EEG done and

actually doing this during the test. That would be

way too weird. I'm sure our doc will refer to a

neurologist though. The one I had before is through a

different medical center so I will need a

recommendation.

Tamara

--- bunnytiner wrote:

> Tamara:

>

> It sure sounds seizure-ish to me. I think you can

> have one or two clear

> EKGs and still have seizures develop. All kids with

> neurological disorders

> are more prone to developing seizures so I would

> definitely see a

> neurologist about it.

>

> It could be a visual stim of some kind too, but I

> would check it out.

>

> As for the language decrease, well, that is

> worrisome. Seizures will do

> that also, I do believe. What is she currently

> taking because the

> Dextrostat? Supplements? Is she on any special

> diets?

>

> Salli

>

>

__________________________________________________

[Guest guest]

Tamara,

Definately sounds like absence seizures. Have her checked again and give

the Dr. as detailed a description as you can of what you observed and how

many times it's happened. They may need to do a longer or video taped EEG

to get it.

Also, ask him if it's possible that by giving her just an ADD med, it could

be allowing her to focus more on the autistic thoughts in her head (this

happened to ). This may be why you've seen behavior changes for the

worse in her since starting the med. We had to give an antidepressant

too and then he make great improvements, even at very low doses.

Good luck!

Sue

[Guest guest]

Around here they don't like using sedation any more if it's at all possible

to avoid it.

Sue

RE: Need help....Ebony (long)

> >>So did you try a seizure med without doing an EEG?

>

> No, because it did not happen again. We are always on the lookout tho &

if

> it happens again we'll go back. Although I have considered that these

> tantrums he's having could be some kind of seizure. We are seeing someone

> Wed. about them.

>

> I don't believe an EEG can be done under sedation. And that was another

> reason we opted not to go that route -- it just wouldn't happen. You

should

> have seen the fit he had over the EKG which he only had to be hooked to

for

> 12 seconds...3 people holding him down and him screaming at the top of his

> lungs...

>

> Good luck & let us know!!!

>

> -Sara.

>

>

>

>

>

>

>

>

[Guest guest]

There are two types of seizures. Grand mal (sp?) is where they fall to the

ground bucking wildy. Petite mal is where they blank out for a short time.

Hope you get answers soon

Tuna

Re: Need help....Ebony (long)

That's what I think, too. I just wanted some

verification that this is what it sounds like. To me,

seizures are when people fall on the floor bucking and

biting their tongues off like in the movies.

Thanks, Kandie

TamaraGet more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Tamara,

Did you find out what was wrong with Ebony? I don't

have any suggestions, but wanted you to know that I

was concerned.

Ginger

__________________________________________________

[Guest guest]

Thanks, Tuna. We have an appt next Friday.

Tamara

--- More Tuna wrote:

> There are two types of seizures. Grand mal (sp?) is

> where they fall to the ground bucking wildy. Petite

> mal is where they blank out for a short time.

>

> Hope you get answers soon

>

> Tuna

>

> Re: Need help....Ebony

> (long)

>

> That's what I think, too. I just wanted some

> verification that this is what it sounds like. To

> me,

> seizures are when people fall on the floor bucking

> and

> biting their tongues off like in the movies.

> Thanks, Kandie

> TamaraGet more from the Web. FREE MSN Explorer

> download : http://explorer.msn.com

>

>

> [Non-text portions of this message have been

> removed]

>

>

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