RE: Re: Abnormal EEG with spikes??

April 7, 2006

Kristie,

I wish I knew. Many kids have seizures. I've also heard of some

having abnormal EEGs without having seizures.

Is the neurologist recommending seizure meds? Is he really pushing you to

get started on them? Do you get the feeling he feels it is urgent?

I guess I would worry that your son might have a seizure before I got to Dr.

Goldberg. One the other hand, I would also worry that trying him out on

anticonvulsants might even trigger a seizure that he might not have had

otherwise. We saw our son start having a new seizure type as we changed

anticonvulsants and the seizures even worsened horrifically (he started

having MAJOR drop attacks) as he had a reaction to a med (Chloral Hydrate)

that was just being used to sedate him for an EEG. The brain is very

delicately balanced and each child is different.

My 5 year old is a patient of Dr. Goldberg and he is also on an

anticonvulsant. I know Dr. Goldberg likes some anticonvulsants better than

others. My son is on Lamictal at present (he started this before starting

with Dr. Goldberg) and we were terrified to try it... it can have some

really bad side effects, but we finally got to the point (after trying every

other pertinent anticonvulsant) where it was either that or the Ketogenic

Diet, which has its own set of problems. The good thing about Lamictal is

that it is not supposed to have cognitive side effects... most of the other

anticonvulsants we tried did have cognitive side effects.

I wish I could tell you which anticonvulsants Dr. Goldberg prefers, but I

don't know. My son is on Lamictal and at first Dr. Goldberg wasn't too hot

on that but he looked into it a little bit and decided he was OK with it. I

believe I have also heard him mention Neurontin as one he thinks is

relatively safe. We didn't try Neurontin because it wasn't the right thing

to treat my son's multiple seizure types.

Either way it is sort of a gamble, I suppose. Then again, if your son is

not having outright obvious seizures, and he is put on an anticonvulsant, it

may be difficult to know if the abnormal waves are even controlled because

EEGs can be so variable. My son had a normal EEG in the midst of having

seizures (it was during a little lull... then they started up again).

First maybe you could ask the neurologist which anticonvulsants he might

recommend for your son's situation (and in which order and why). Then read

everything you can about them on epilepsy.com (great website).

Then you might want to try getting onto a Tuesday night chat and asking Dr.

Goldberg which of the anticonvulsants he prefers. At least that would give

you a little feel for what he might be comfortable with when your son enters

his practice. If you go the anticonvulsant route and find something that

works, you want to be able to stay with it and not switch around. It can

take months to wean from one anticonvulsant to another and some can't be

weaned to straight from others due to higher chances of side effects due to

drug interactions.

I've probably said too much... hope it was helpful, though. Good luck!

Caroline

> From: aaron2kristie <aaron2kristie@...>

> Reply-< >

> Date: Fri, 07 Apr 2006 04:28:10 +0000

> < >

> Subject: Re: Abnormal EEG with spikes?? CAROLINE

>

> I guess what I am trying to ask you and others is:

> do you think it wise to start my son on an anti convulsant and then go

> the route? Or wait for an appointment for the protocol? To

> be clear my son had an abnormal EEG but has not (to my knowledge) had

> a seizure. He may have had an atonic (I think--drop seizure; lost

> consciousness for a few moments as an infant) seizure but that is all

> thus far.

>

> Kristie

> mommy to Aidan 2.10 today

April 7, 2006

Kristie,

I want to throw in that I HIGHLY recommend seeing a PEDIATRIC neurologist if

you aren't already. It made a world of difference for my son. I wish we

had gone there first. Our son's first neurologist was very careful and

never made a move without consulting his mentors at the big children's

hospital (Riley) in our state, but after he a while he humbly said " You need

someone smarter than I am. " and he sent us to a pediatric neurologist at

Riley. That neurologist has a reputation for having an uncanny knack for

figuring things out and he is dealing with children, day in and day out. He

approached things from a completely different angle and we got the seizures

stopped (I have to say I think the treatments helped out a lot there as

well).

Just a thought.

Caroline

April 8, 2006

How do you know if your child is having seizures in

the mildest form? My son will occassionally stare off

as in a daze, but if I wave my hand in front of him or

as him to stop, he will. Has anyone ever heard of

that being called a " silent seizure? "

--- Caroline Glover <sfglover@...> wrote:

> Kristie,

>

> I want to throw in that I HIGHLY recommend seeing a

> PEDIATRIC neurologist if

> you aren't already. It made a world of difference

> for my son. I wish we

> had gone there first. Our son's first neurologist

> was very careful and

> never made a move without consulting his mentors at

> the big children's

> hospital (Riley) in our state, but after he a while

> he humbly said " You need

> someone smarter than I am. " and he sent us to a

> pediatric neurologist at

> Riley. That neurologist has a reputation for having

> an uncanny knack for

> figuring things out and he is dealing with children,

> day in and day out. He

> approached things from a completely different angle

> and we got the seizures

> stopped (I have to say I think the treatments

> helped out a lot there as

> well).

>

> Just a thought.

>

> Caroline

>

Barb Katsaros

barbkatsaros@...

__________________________________________________

April 8, 2006

You might read about absence seizures. They can be

brief and hard to detect by EEG most of the time. But

I don't know how responsive a child is during that

time. I know I definitely 'zone out', but waving your

hand would get my attention, and it's not a seizure.

But it could be different for kids.

--- Barb Katsaros <barbkatsaros@...> wrote:

> How do you know if your child is having seizures in

> the mildest form? My son will occassionally stare

> off

> as in a daze, but if I wave my hand in front of him

> or

> as him to stop, he will. Has anyone ever heard of

> that being called a " silent seizure? "

>

> --- Caroline Glover <sfglover@...> wrote:

>

> > Kristie,

> >

> > I want to throw in that I HIGHLY recommend seeing

> a

> > PEDIATRIC neurologist if

> > you aren't already. It made a world of difference

> > for my son. I wish we

> > had gone there first. Our son's first neurologist

> > was very careful and

> > never made a move without consulting his mentors

> at

> > the big children's

> > hospital (Riley) in our state, but after he a

> while

> > he humbly said " You need

> > someone smarter than I am. " and he sent us to a

> > pediatric neurologist at

> > Riley. That neurologist has a reputation for

> having

> > an uncanny knack for

> > figuring things out and he is dealing with

> children,

> > day in and day out. He

> > approached things from a completely different

> angle

> > and we got the seizures

> > stopped (I have to say I think the treatments

> > helped out a lot there as

> > well).

> >

> > Just a thought.

> >

> > Caroline

> >

>

> Barb Katsaros

> barbkatsaros@...

>

> __________________________________________________

>

April 8, 2006

Barb, I found this at the following link...

http://www.emedicine.com/neuro/topic342.htm

" All partial seizures are characterized by onset in a limited area, or

focus, of one cerebral hemisphere. The International Classification of

Epileptic Seizures (ICES) classifies simple partial seizures (SPS) as those

that are not associated with any impairment of consciousness. Although the

ability to respond may be preserved, motor manifestations or anxiety

relating to the seizure symptoms may prevent a patient from responding

appropriately. The level of consciousness may be difficult to determine

during a partial seizure, especially in infants, cognitively impaired

individuals, and aphasic patients. The lack of availability of trained

persons to interact directly with the patient during and after the seizure

can make distinctions between simple and complex partial seizures difficult,

even with high-resolution video-EEG. "

I guess that may mean that some people ARE able to respond during a seizure.

I had never heard that before. I was told by a neurologist that if someone

could be " snapped out of it " that it wasn't a seizure. It sounds like there

is a little bit of a gray area there. I know that the neurologists were

unable to discern for sure whether my 5 year old son (then 3) was having

" absence seizures " using the most sophisticated equipment available at the

" big " children's hospital in our state. He had a 3-day video EEG, and

during that, there were a few " episodes " that they saw on the readout that

looked as if he could be having an absence seizure... they then reviewed the

video trying to see if he was truly having one... and they just couldn't

tell. I had never thought he had absence seizures, and I have tried to

watch for them since then and have never felt as though I have seen one, but

maybe he was having them. I guess I'll never know.

I know my 11 year old gets so hyperfocused on things he is doing (such as

reading) that I could scream in his ear that the house was on fire and he

wouldn't even register it. The only way I can get his attention is by

putting my hand over his eyes. Then he says " MOM.. stop!! " . He'll say that

he heard me talking before but it didn't register that he needed to

listen... he just tunes everything and everyone out.

Caroline

> From: Barb Katsaros <barbkatsaros@...>

> Reply-< >

> Date: Sat, 08 Apr 2006 11:00:05 -0700 (PDT)

> < >

> Subject: Re: Re: Abnormal EEG with spikes??

>

> How do you know if your child is having seizures in

> the mildest form? My son will occassionally stare off

> as in a daze, but if I wave my hand in front of him or

> as him to stop, he will. Has anyone ever heard of

> that being called a " silent seizure? "

April 8, 2006

Thanks, Caroline. This was interesting. Barb

--- Caroline Glover <sfglover@...> wrote:

> Barb, I found this at the following link...

>

> http://www.emedicine.com/neuro/topic342.htm

>

> " All partial seizures are characterized by onset in

> a limited area, or

> focus, of one cerebral hemisphere. The International

> Classification of

> Epileptic Seizures (ICES) classifies simple partial

> seizures (SPS) as those

> that are not associated with any impairment of

> consciousness. Although the

> ability to respond may be preserved, motor

> manifestations or anxiety

> relating to the seizure symptoms may prevent a

> patient from responding

> appropriately. The level of consciousness may be

> difficult to determine

> during a partial seizure, especially in infants,

> cognitively impaired

> individuals, and aphasic patients. The lack of

> availability of trained

> persons to interact directly with the patient during

> and after the seizure

> can make distinctions between simple and complex

> partial seizures difficult,

> even with high-resolution video-EEG. "

>

> I guess that may mean that some people ARE able to

> respond during a seizure.

> I had never heard that before. I was told by a

> neurologist that if someone

> could be " snapped out of it " that it wasn't a

> seizure. It sounds like there

> is a little bit of a gray area there. I know that

> the neurologists were

> unable to discern for sure whether my 5 year old son

> (then 3) was having

> " absence seizures " using the most sophisticated

> equipment available at the

> " big " children's hospital in our state. He had a

> 3-day video EEG, and

> during that, there were a few " episodes " that they

> saw on the readout that

> looked as if he could be having an absence

> seizure... they then reviewed the

> video trying to see if he was truly having one...

> and they just couldn't

> tell. I had never thought he had absence seizures,

> and I have tried to

> watch for them since then and have never felt as

> though I have seen one, but

> maybe he was having them. I guess I'll never know.

>

> I know my 11 year old gets so hyperfocused on things

> he is doing (such as

> reading) that I could scream in his ear that the

> house was on fire and he

> wouldn't even register it. The only way I can get

> his attention is by

> putting my hand over his eyes. Then he says " MOM..

> stop!! " . He'll say that

> he heard me talking before but it didn't register

> that he needed to

> listen... he just tunes everything and everyone out.

>

> Caroline

>

> > From: Barb Katsaros <barbkatsaros@...>

> > Reply-< >

> > Date: Sat, 08 Apr 2006 11:00:05 -0700 (PDT)

> > < >

> > Subject: Re: Re: Abnormal EEG with spikes??

> >

> > How do you know if your child is having seizures

> in

> > the mildest form? My son will occassionally stare

> off

> > as in a daze, but if I wave my hand in front of

> him or

> > as him to stop, he will. Has anyone ever heard of

> > that being called a " silent seizure? "

>

Barb Katsaros

barbkatsaros@...

__________________________________________________

April 8, 2006

How could the symptoms of a Chiari 1 Malformation present like autism?

-

Barb Katsaros <barbkatsaros@...> wrote:

, what were your son's symptoms? Would a

neurospect show if there was a problem or would an mri

be necessary? Barb

--- LINDA ANAGNOSTAKOS <lsa5885@...> wrote:

> Hi Kristie,

>

> Has your son had an MRI of his brain ?

>

> My son had neuro. symptoms but was misdiagnosed for

> four years before we

> insisted on an MRI and he was finally correctly

> diagnosed with a severe

> Chiari 1 Malformation.

>

> He needed emergency neurosurgery to decompress his

> brain and give it the

> room it needed to expand in his skull. Our

> neurosurgeon said that this is

> often missed and these kids suffer tramatic brain

> injuries due to the

> failure to diagnose early on.

>

> It is his opinion that all children who present with

> developmental delays

> receive an EEG as well as an MRI to rule out

> underlying medical conditions

> that present like autism.

>

> Take good care,

>

> >From: " aaron2kristie " <aaron2kristie@...>

> >Reply-

> >

> >Subject: Re: Abnormal EEG with spikes??

> CAROLINE

> >Date: Fri, 07 Apr 2006 04:28:10 -0000

> >

> >I guess what I am trying to ask you and others is:

> >

> >do you think it wise to start my son on an anti

> convulsant and then go

> >

> >the route? Or wait for an appointment for the

> protocol? To

> >

> >be clear my son had an abnormal EEG but has not (to

> my knowledge) had

> >

> >a seizure. He may have had an atonic (I think--drop

> seizure; lost

> >

> >consciousness for a few moments as an infant)

> seizure but that is all

> >

> >thus far.

> >

> >Kristie

> >

> >mommy to Aidan 2.10 today

> >

> >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.

> >

> > ! GROUPS LINKS

> >

> > Visit your group " " on the web.

> >

April 9, 2006

Hi ,

I'll try to explain by telling you what happened to my son prior to his

decompression surgeries for the Chiari.

was developing normally, although looking back he had typical

development, then regression, as early as a year old. walked at

fourteen months, very cautiously holding on to the wall ect., he was

speaking , putting 2 words together at that time, happy, interactive and

playful.

Then it seemed like overnight he changed, he started to wake up and scream

or laugh and repeatedly stand then fall on his head. He stopped talking, he

would only eat soft foods otherwise he would gag, he would scream and hold

his head for hours. He wanted to be held at all times, didn't want to walk,

everything became a challenge. He looked like he was becoming autistic but

still the whole picture didn't make sense to me.

We had him evaluated by a developmental specialist at 2 1/2 yrs. old. She

was concerned about his health as he didn't look well, but mainly

concentrated on his development. She suggested we start intervention, which

we did.

I also continued to take him to specialists, fouteen in all, not to mention

the fellows and residents who saw him. He was hospitalized a few times and

diagnosed with malabsorption, renal tubular acidosis, immune deficiency,

sluggish autonomic nervous system??, the list goes on and on . It seemed

that every doctor had a diagnosis but no one tried to put it all together.

Truely I thought that they felt that I was a deperate mother who couldn't

accept that her son was on the spectrum.

While in sp. ed. preschool I noticed how ill he always looked compared to

the other children. He was so thin, pale, started to develop gray hair, his

behaviors were horrible, he would scream if you made him stand up for any

length of time. He did start to talk again around three years old and would

say, " I'm a sad boy " over and over to us.

His pupils were always dialated, his eyes looked black even in the bright

sunlight. He would complain that he heard bees in his ears, he wanted us to

squeeze him so he could feel his body, he then became extreamly hyperactive

, he ran like a motor most of the time.

Finally one day, while holding him in my arms and looking into his eyes, I

noticed that his right pupil constricted and the left remained dialated. I

was freaked out by this and insisted that he receive an MRI of his brain.

Low and behold he was diagnosed with a very severe chiari 1 malformation,

brain stem compression, basilar impression, spinal cord compression and he

had almost no CSF flow to his brain at that time.

Basically 's skull was too small to accomdate his growing brain and it

grew down into his spinal canal about three inches. He suffered a tramatic

brain injury as a result. The cerebellem was damaged.

He needed to see a neurosurgeon immediately and underwent four

neurosurgeries in all. Too long a story to tell now!!

Children with Chiari all present differently, some only have a slight

headache and suttle issues (sensory problem , fine and gross motor delays,

almost all have speech delays). 's case was severe and he still suffers

with pseudo tumor and headaches almost everyday.

He has made amazing progress, is mainstreamed in a typical kindergarten with

assistance. Has wonderful language, an above average IQ, and is finally

having conversations with us!! All is well, but we still have lots of

catching up to do.

I hope this answers your question, sorry for the long post, it's been an