RE: absences seizures - help

September 28, 2010

My son was born with an extremely rare brain deformity called

hemimegalencephaly which caused 1,000s of seizures per day. So, we have a

bit of experience with them.

First make sure you are at a top pediatric epilepsy institution. UCLA,

Duke, Cleveland Clinic, s Hopkins, NYU, Boston Children's, Miami

Children's to name a few. I'm assuming the ischemic stroke was unilateral

- do you know when he had it? They should do a video EEG for as long as is

needed to capture activity. My son never needed more than a 24-hour EEG

because of the frequency of his seizures. But you should insist on staying

until the absence episode is captured. Additionally, they shouldn't sedate

him in any way because this will quiet the seizure activity.

Certain anti-epilepsy drugs (AEDs) are more effective for absence seizures

so make sure your neurologist knows which to give. Again, I cannot stress

enough how important it is to be sure you're at a top facility.

Make sure the MRI is with an epilepsy protocol, because a simple MRI won't

capture all the activity either (and, even with the epilepsy protocol, they

may not be 100% accurate.) Feel free to email me offline if you need

further help.

Monika

_____

From: [mailto: ]

On Behalf Of jacqueline martin-sebell

Sent: Tuesday, September 28, 2010 6:49 AM

undisclosed recipients:

Subject: [ ] " absences " seizures - help

Mikey (5, ASD, CP, DD) had absence seizures (or what we thought were)

when he was younger. They seemed to be better until about a month ago.

He's back to having these episodes a couple times a week.

His neuro is scheduling another EEG (although haven't received phone

call yet) and he's having another MRI on Monday (last one showed

ischemic stroke and focal area brain abnormality).

Saturday night we had a dance slumber party for my dd's bday. We had a

strobe light on and Mikey had almost a minute long episode. Of course,

we shut the light off. Further making me believe they are seizures of some

kind.

I have really no education on seizures (or whatever you want to call these

episodes) and could use any info anyone has.

What kind of EEG's can they do for this young? Last one was 24 hour

sleep deprived but I'm interested in a longer one. A friend of mine

went through over 20 years of episodes before having a 3 day eeg done

which showed over 90 episodes. I was with her the whole time and only

noticed a handful. I dont' want mikey to go through years of this

(further causing neuro problems).

Has anyone done anything more then a 24 hour EEG? Any advice/info on

the seizures/episodes or where I may go to read more about it.

Thanks,

Jackie -Sebell

Family Blog...http://sebellfamily.blogspot.comPure Romance website...message

me for more details and specials;

http://jackiesebell.pureromance.com

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October 23, 2010

Hello Monika

I have son 6y who has abnormal EEG but has not been desyded for epilepcy and

after that no one tels us what is wrong the kid is non verbal and ASD but i have

heard there is new metod or evoced potentials to fynd out is there epileptoforms

or could you help me as hi has epileptoforms but not epilepsy i dont undurstand

how his EEG is abnormal but not desease or not been explayned to me i know there

is a new way of testing the kids are awake and wach some on like tv but i cant

fynd what exactly is i have send an e-mail to a lady from india originaly but

working with kids wich were misdiagnosed but never get answr back.

Thank you for your help

From: Monika <monikajones7@...>

Subject: RE: [ ] " absences " seizures - help

, 'undisclosed

recipients:'@...

Date: Tuesday, 28 September, 2010, 17:14

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