Re: seizure disorders/Update

[Guest guest]

Daphne,

You're right about the seizures. It's just the way the one person posted " I am

so relieved to know that seizures cannot kill you " which I didn't want everyone

else on this list to read and God forbid their child has their first seizure

tomorrow and they figure it's no big deal since it can't kill them and not get

immediate help.

My son was 2 1/2 when diagnosed with autism and the specialist asked me if I'd

noticed any symptoms, like spacing out, that could be seizure activity. Well

Mark had that since infancy but no one listened to me about it aside from doing

a lead test when he was 10 months old. Anyway, sure enough, one week after this

specialist asked me to start watching him closely, while playing at Mcs

Playland my son fell to the ground with absolutely no pulse, breathing or

detectable heartbeat. I have several friends who have epilepsy so I was waiting

for the twitching and was pretty comfortable dealing with it since I had helped

my friends so much in college, but alas he never twitched. He basically laid

there dead in my arms while onlookers watched. Thankfully he did eventually

begin breathing again on his own but my point is that there are definitely times

when seizures are an emergency situation. There's an off chance that he

wouldn't have begun to breathe again. Thankfully he hasn't had a seizure in

about 4 years but I'm not looking forward to puberty when they could possibly

return (or so the pros say).

I'm glad there are so many people on this list to help provide facts and

support.

Thanks,

Tammy

[Guest guest]

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

--- In @y..., " Tammy Sowell " <Tammy_S68@m...>

wrote:

> Daphne,

>

> You're right about the seizures. It's just the way the one person

posted " I am so relieved to know that seizures cannot kill you "

which I didn't want everyone else on this list to read and God

forbid their child has their first seizure tomorrow and they figure

it's no big deal since it can't kill them and not get immediate

help.

>

> My son was 2 1/2 when diagnosed with autism and the specialist

asked me if I'd noticed any symptoms, like spacing out, that could

be seizure activity. Well Mark had that since infancy but no one

listened to me about it aside from doing a lead test when he was 10

months old. Anyway, sure enough, one week after this specialist

asked me to start watching him closely, while playing at Mcs

Playland my son fell to the ground with absolutely no pulse,

breathing or detectable heartbeat. I have several friends who have

epilepsy so I was waiting for the twitching and was pretty

comfortable dealing with it since I had helped my friends so much in

college, but alas he never twitched. He basically laid there dead

in my arms while onlookers watched. Thankfully he did eventually

begin breathing again on his own but my point is that there are

definitely times when seizures are an emergency situation. There's

an off chance that he wouldn't have begun to breathe again.

Thankfully he hasn't had a seizure in about 4 years but I'm not

looking forward to puberty when they could possibly return (or so

the pros say).

>

> I'm glad there are so many people on this list to help provide

facts and support.

> Thanks,

> Tammy

[Guest guest]

Traci wrote:

. Did your son end

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

going on?

I know you were emailing Tammy but thought I would jump in and add my two

cents worth. My son was diagnosed with epilepsy by EEG, he had three EEG's

before the official diagnosis and an MRI. His first EEG was at 14 months and

was normal, the next one was unreadable due to his activity during the session

and the third showed spikes consistent with seizure activity. Hope this is

helpful.

Daphne mom to Spencer 5 1/2 yrs epilepsy; Zach 3 yrs SID, hypotonia, oral/limb

apraxia; Noah 6 months

[Guest guest]

I second the opinion that this is breath holding spells - but I would

not just do an EEG to rule out seizures, but do a 24-48 hour EEG,

preferably as an ambulatory EEG, where they wire her up, and let her

go about her usual activities, with the EEG being recorded on a

walkman like device (sort of like a Holter monitoring for EKG) and

you watching for an event like you described. Otherwise, you may

miss the spell, or she might not seize at all during the hour or two

that they do the regular EEG.

Good luck,

Larry Laveman, MD

Consultant, CHERAB

http://www.apraxia.cc

> > Daphne,

> >

> > You're right about the seizures. It's just the way the one

person

> posted " I am so relieved to know that seizures cannot kill you "

> which I didn't want everyone else on this list to read and God

> forbid their child has their first seizure tomorrow and they figure

> it's no big deal since it can't kill them and not get immediate

> help.

> >

> > My son was 2 1/2 when diagnosed with autism and the specialist

> asked me if I'd noticed any symptoms, like spacing out, that could

> be seizure activity. Well Mark had that since infancy but no one

> listened to me about it aside from doing a lead test when he was 10

> months old. Anyway, sure enough, one week after this specialist

> asked me to start watching him closely, while playing at Mcs

> Playland my son fell to the ground with absolutely no pulse,

> breathing or detectable heartbeat. I have several friends who have

> epilepsy so I was waiting for the twitching and was pretty

> comfortable dealing with it since I had helped my friends so much

in

> college, but alas he never twitched. He basically laid there dead

> in my arms while onlookers watched. Thankfully he did eventually

> begin breathing again on his own but my point is that there are

> definitely times when seizures are an emergency situation. There's

> an off chance that he wouldn't have begun to breathe again.

> Thankfully he hasn't had a seizure in about 4 years but I'm not

> looking forward to puberty when they could possibly return (or so

> the pros say).

> >

> > I'm glad there are so many people on this list to help provide

> facts and support.

> > Thanks,

> > Tammy

[Guest guest]

Hi Robyn:

Your daughter's story is certainly one that would warrant an EEG - as

there are several possible causes of the events, including seizures

and breath-holding spells.

Since you live far from the hospital, the ambulatory EEG, as I have

described before, would make sense, since you can witness an event,

document the time, duration, etc. and then have the EEG reviewed at a

later date to see if it correlates with the event. During the

ambulatory EEG, her EKG is also monitored, to rule out any heart-

related changes. Certainly, if during any event, she turns blue or

stops breathing, don't waste time and call EMS. Make sure you and

her caregivers know BLS (basic life support).

--- Pause for public service announcement ----

EVERYONE:

Basic Life Support, also called Heartsaver, which is offered through

the American Heart Association and the Red Cross, is something

EVERYBODY should know. If one in three persons knew how to do CPR,

rescue breathing, and Heimlich, tens of thousands of American lives

would be saved every year, and countless millions worldwide.

Most ambulance corps, fire departments, and hospitals offer this as a

public service. Do a class, renew your certificate, and save lives !!

It only takes two hours once a year.

--- END OF PUBLIC SERVICE ANNOUNCEMENT --

Larry Laveman, MD

Consultant, CHERAB

http://www.apraxia.cc

--- In @y..., " Robyn " <mysticcreek@a...>

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

>

>

>

>

[Guest guest]

Robyn,

Those sound like they could definitely be seizures to me, especially if your

child is tired when she wakes up from them. I have a toddler who does the

temper tantrum passing out thing and it's TOTALLY different than the behavior my

autistic son and other daughter experience. It's good that you are looking into

this further and not just believing what that doctor told you. It took 3

doctors to diagnose my son with autism if you can believe that...they were just

unwilling to listen to the concerns of a " first time mom " . But you know your

child better than anyone else in the world, PhDs included so stick to your guns.

Good luck!

Tammy

[Guest guest]

I'm not sure if this question is to me or not but in case it is....Mark first

had an EEG after the Mcs incident. It was normal but they only did it for

20 minutes. About a year later they did a sleep deprived EEG because he was

" spacing out " at times. That EEG lasted about 30 minutes and was normal also.

I was told that EEGs don't always catch seizure disorders but since Mark's drop

episodes had stopped at that point, we all decided (a whole team of specialists)

that Mark probably HAD had seizures but now is either having them infrequently

(the spacing out thing) or else isn't at all and because of the side effects of

all the meds that at this point it is better to watch and see what happens.

Thankfully he is no longer having any questionable episodes but again the

specialists tell me that they may return when he hits puberty. He is currently

8 1/2. Hopefully we won't have any more problems. My daughter was also

recently tested with a 48 hour in-hospital EEG which thankfully was normal. She

has a sleep disorder along with the dyspraxia and hypotonia but she does NOT

have autism.

Tammy :-)

Traci wrote:

. Did your son end

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

going on?

I know you were emailing Tammy but thought I would jump in and add my two

cents worth. My son was diagnosed with epilepsy by EEG, he had three EEG's

before the official diagnosis and an MRI. His first EEG was at 14 months and

was normal, the next one was unreadable due to his activity during the session

and the third showed spikes consistent with seizure activity. Hope this is

helpful.

Daphne mom to Spencer 5 1/2 yrs epilepsy; Zach 3 yrs SID, hypotonia, oral/limb

apraxia; Noah 6 months

[Guest guest]

Dr. Laveman, and everyone,

Thank you for responding to my post about my daughters seizures. I have been

gathering all my info to take to my doctor to tell him what we need to do. If he

does not agree I will find one who does. Thank you again everyone for your input

and support.

Robyn