Re: Re: seizure disorders/Update

[Guest guest]

First I am starting with an update. My son Zach started using Efalex about 4

months ago and we switched to ProEFA because he had some changes but the

plateaued. He said his first word about a week ago, it was HI with the real use

of the I, it was so exciting. We have heard it a couple of times since then and

he is beginning to repeat sounds on command for the first time. My other child

, 5 year old, is on Efalex for hyperactivity and we have seen him calm down alot

in the last few weeks, I waited to start him because of his epilepsy but we

haven't had any trouble at all.

Just wanted to add my two cents worth re: seizures usually not causing death.

This is true but they can cause brain damage if not treated. If your child has

seen a neurologist and had EEG's and MRI after seizures then you are most likely

safe. I am an RN who began my career on a neuro floor and now have a child with

epilepsy--how likely is that?? He is on medication to control his epilepsy and

has been for 2.5 years, he is 5.5 years now. He does not get levels drawn

because we are using a medication that does not require this-- I just wanted you

all to know that epilepsy/CONTINUED SEIZURE activity uncontrolled is most likely

not going to kill you but can cause severe brain damage. If your child is

having seizure activity just go see a pediatric neurologist and have them

tested. Good Luck and God bless.

Daphne

Mom to Spencer 5.5 years--epilepsy with normal development; Zach 3 years

Apraxia (Oral/Limb), SID, Hypotonia; Noah 5.5 months

[Guest guest]

Hi Traci,

I agree with Dr. Laveman that you need an EEG that is at least 24 hours long.

My daughter recently had one and aside from being stuck in her room because the

leads only reached so far, she did really well and we were able to rule out

seizures with her. She too was spacing out but mainly has a sleep disorder that

worried her specialist that she may be having underlying seizures in the

night...thankfully she isn't.

Your child sounds much different than my Mark did though. Mark as an infant was

always a tired baby. Until he was nearly two he slept about 18-21 hours a day!

Most kids learn how to climb out of their cribs...Mark learned to climb into his

and he'd be sleeping in it when I'd find him. Then, even after lengthy naps,

he'd get up and within 30 minutes he'd be crawling across the floor and

basically it appeared that he fell asleep. He'd kind of close his eyes and

collapse on the floor for a second or two, then he'd pick himself up (wake up)

and start crawling again. When I told his pediatrician about how much he slept,

how exhausted he always seemed to be, and these falling asleep while crawling

episodes he was really unconcerned except to take a blood test to check for lead

poisoning. After that all of my concerns fell upon deaf ears with this dr. I

was a " first time mom " who knew nothing (according to him).

Thankfully we moved and had to find a new pediatrician. I asked her at Mark's

first appointment, which was his two year checkup about my concerns which by

then was quite a long list. This dr. is fabulous and took my concerns quite

seriously. She referred us to the Children's Hospital to a developmental

pediatrician and that is when Mark was officially diagnosed with autism. By the

time we waited 6 months to see this specialist however I had surfed the net and

figured out that he had autism before we went to his appointment. Also during

this time, his dropping/sleep episode problem seemed to stop and they did do an

EEG but one that was like 30 minutes in length and it didn't turn up a thing.

The development pediatrician asked me if I noticed him spacing out etc. to

document it all and to let them know because it was probably seizures and

thankfully she did tell me that (it was the first time someone had) because one

week later we were at Mcs and Mark came out of the Play area acting quite

odd. Since I have 2 friends with epilepsy it appeared to me that he was about

to have a seizure. His eyes were darting around unfocused, he was VERY pale and

purple around his lips and he was making noises that were quite weird for him.

He didn't want me to touch him so I stood him down to the ground....he took

three steps and went down...no twitching at all it appeared that he fell asleep.

I grabbed him and my friend screamed " Oh my God Tammy his eyes just rolled back

into his head " which I hadn't seen because I was grabbing him from behind.

Anyway I checked him out and he was not breathing, there was no pulse, nothing.

I was quite pregnant with baby #2 at the time and NO ONE in the restaurant would

do anything but stare. My friend ran to my car to grab the cell phone to call

911 since no one else was. Eventually he did start breathing but I'm sure 3

minutes or so passed before he did.

They did a sleep deprived EEG then and it was normal. We decided that we would

just watch him because these episodes are far apart and the side effects of the

medications he would need would outweigh not using anything. By the time he was

4 he had no more of these episodes. But I have been told they may return when

he reaches puberty. If I had it all to do again though I would absolutely have

insisted on a 24-48 hour EEG but they what did this first time mom know right?

;-)

Good luck!

Tammy

[ ] Re: seizure disorders/Update

Hi Tammy - sorry to jump in here and change subjects, but my

daughter also spaces out (nonresponsive and then kind of snaps out

of it. usually only happens at quiet times though which makes me

suspect she is just day dreaming) and has had 2 episodes where she

collapsed which were preceded by hyperventilating. Her ped said she

had breath holding episodes and passed out. I let it go, but

mentioned it to her neuro the other day and he immediately sounded

concerned and wants to an EEG. Now I'm concerned. Did your son end

up having an EEG and was it confirmed that he had seizure activity

going on?

Thanks, Traci mom to Kennedy 2.0 and Hunter 4.6

[Guest guest]

Dr. Laveman,

I have been reading with interest the post on seizures. My daughter is 2.2 years

old. And I believe she has had 2-4 seizures since October 2001. The first one

occurred as she was getting mad at her brother & was coming to me crying. She

walked right past my outstretched arms and fell straight as a board onto the

floor. I turned to where she fell and she instantly started arching her back and

jerking her legs and head. It lasted maybe one minute. When she stopped I picked

her up & she went limp in my arms she was out. In a few seconds she opened her

eyes and looked at me like she was not sure who I was or who she was. After a

few minutes she was ok but clearly shaken by the experience. I called our

pediatrician and took her straight to his office as he said. He examined her and

said it was from holding her breath. basically she had a temper tantrum and

passed out. I was not sure about this and called him a few day later and he

stood by his first assessment. Well my daughter has thrown some major fits

crying holding her breath screaming before and this had not happened. So I

decided to watch her real close. About two months later she fell and was crying

and almost passed out. But no arching or jerking. Then three weeks ago she fell

I picked her up thinking she tripped, when I picked her up she was stiff then

she started arching and jerking. It lasted maybe 30 seconds then she was out, in

a few seconds opened her eyes started crying and within a few minutes was back

to herself. Then the next day we were at the park and she was sitting at a

picnic table and fell straight back off the bench she almost passed out then but

no arching jerking. now I'm wondering if she had a seizure then and blacked out

for a second and that is why she fell. I guess what I'm asking from you do you

think I need to find a doctor to look into this more or just go with what our

regular doctor says. I have talked to him after the latest episodes and he says

to take her to the hospital if it happens again and have a EEG done. But it

would take us 30 minutes to an hour to get there would that still show anything?

Thank you for any help.

Robyn

[Guest guest]

Robin,

I am not dr. laveman, and not a dr. but I would trust

your instincts and take her to another dr. for this, I

have never heard of a child shaking and arching back

from a temper tantrum. Just to be on the safe side.

Eileen

--- Robyn <mysticcreek@...> wrote:

> Dr. Laveman,

> I have been reading with interest the post on

> seizures. My daughter is 2.2 years old. And I

> believe she has had 2-4 seizures since October 2001.

> The first one occurred as she was getting mad at her

> brother & was coming to me crying. She walked right

> past my outstretched arms and fell straight as a

> board onto the floor. I turned to where she fell and

> she instantly started arching her back and jerking

> her legs and head. It lasted maybe one minute. When

> she stopped I picked her up & she went limp in my

> arms she was out. In a few seconds she opened her

> eyes and looked at me like she was not sure who I

> was or who she was. After a few minutes she was ok

> but clearly shaken by the experience. I called our

> pediatrician and took her straight to his office as

> he said. He examined her and said it was from

> holding her breath. basically she had a temper

> tantrum and passed out. I was not sure about this

> and called him a few day later and he stood by his

> first assessment. Well my daughter has thrown some

> major fits crying holding her breath screaming

> before and this had not happened. So I decided to

> watch her real close. About two months later she

> fell and was crying and almost passed out. But no

> arching or jerking. Then three weeks ago she fell I

> picked her up thinking she tripped, when I picked

> her up she was stiff then she started arching and

> jerking. It lasted maybe 30 seconds then she was

> out, in a few seconds opened her eyes started crying

> and within a few minutes was back to herself. Then

> the next day we were at the park and she was

> sitting at a picnic table and fell straight back off

> the bench she almost passed out then but no arching

> jerking. now I'm wondering if she had a seizure then

> and blacked out for a second and that is why she

> fell. I guess what I'm asking from you do you think

> I need to find a doctor to look into this more or

> just go with what our regular doctor says. I have

> talked to him after the latest episodes and he says

> to take her to the hospital if it happens again and

> have a EEG done. But it would take us 30 minutes to

> an hour to get there would that still show anything?

> Thank you for any help.

> Robyn

>

>

>

> [Non-text portions of this message have been

> removed]

>

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