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What if you spend a week in video EEG monitoring and can't record a seizure?

Wed, 01/28/2009 - 23:59
My son is 12 yrs old with focal, complex partial seizures and tonic clonic sx. He has had a PET, MRI, and several EEG's. We went to an epilepsy center twice, three months apart, for video-EEG monitoring to try to locate the seizure focus, to see if he might be a surgical candidate. Each time, we were there for 8 days, totally off meds, and he never had a seizure. After the first trip, he was taken off Trileptal and Keppra because the doctors thought the Trileptal might actually be making him worse. (He has sx about 2-3 times a month and misses a day or two of school each time.) He was started on Topamax, but still has the same number of sx. Then we went for the second try. After that failed, he was returned to Topamax and Lamictal was added.MY QUESTION: Is there any other way to see if the sx are coming from a localized area than an ictal EEG? If you can't get an ictal EEG, do you just go home and suffer, and stay on drugs forever? (By the way, his inter-ictal EEGs show spikes on the left side, the PET shows hypometabolism in several lobes on the left side, and his sx simeology indicates a left-side start to the seizures. The MRI showed left ventricle larger on left than right.) We feel like we have hit a brick wall in trying to figure out what to do for him.

Comments

Re: What if you spend a week in video EEG ....

Submitted by karissayoungforever on Wed, 2011-03-02 - 01:38
If he has epilepsy it usually shows on the EEG but sometimes it doesn't and sometimes seizures is just a one time thing or a "one off" Karissa 3

Do I have to have a seizure in VEEG?

Submitted by NewJersey on Mon, 2010-03-22 - 19:27

I am signed up for a VEEG at the end of next week.  From everything I read here and all over the Internet, it looks as if they want to capture a seizure?

I explained to the neurologist that I could not have another seizure.  The one I had in October ripped my rotator cuff so badly I needed surgery.  That could happen again. Compared to that, the fact that I bit my tongue so badly in January that I could barely swallow for a week is inconsequential, but it was truly horrible.

The doctor swore to me that they would not try to bring on a seizure, but could he have been playing with words?  Is it possible that they are really hoping to somehow observe me have another grand mal?

Has anyone had a VEEG where they did not try to induce or precipitate or observe a seizure?

As Arthur Hugh Clough wrote:

Thou shalt not kill; but needst not strive/ Officiously to keep alive: 

(http://www.potw.org/archive/potw238.html)

what if they're really kinda hoping that I'll have a seizure in the unit, and won't knock themselves out to prevent it?  It's no big deal for them, but it's very traumatic for me.

Best wishes from New Jersey

 

I am signed up for a VEEG at the end of next week.  From everything I read here and all over the Internet, it looks as if they want to capture a seizure?

I explained to the neurologist that I could not have another seizure.  The one I had in October ripped my rotator cuff so badly I needed surgery.  That could happen again. Compared to that, the fact that I bit my tongue so badly in January that I could barely swallow for a week is inconsequential, but it was truly horrible.

The doctor swore to me that they would not try to bring on a seizure, but could he have been playing with words?  Is it possible that they are really hoping to somehow observe me have another grand mal?

Has anyone had a VEEG where they did not try to induce or precipitate or observe a seizure?

As Arthur Hugh Clough wrote:

Thou shalt not kill; but needst not strive/ Officiously to keep alive: 

(http://www.potw.org/archive/potw238.html)

what if they're really kinda hoping that I'll have a seizure in the unit, and won't knock themselves out to prevent it?  It's no big deal for them, but it's very traumatic for me.

Best wishes from New Jersey

 

Re: a week in video EEG monitoring and can't record a seizure?

Submitted by Blondie46 on Thu, 2009-01-29 - 10:25

 

We had the same thing happen.  My daughter is 13 and had her first seizure in October 2008.  I asked to leave after 3 days.  They eliminated her Keppra but kept her on Depakote.  After being home for 5 days she had two seizures in 24 hours.  Go figure.  LTM is extremely hard to get through and the staff were so cold ;distant. 

I am going to look into a neuro at a level four facility.  There is one about an hour from where we go now. 

Now we are on Depakote 500mg morning  250mg lunch 500mg bedtime.  She is so tired!  She has missed so much school also.  It is a hard hard life for these kids.  I also feel like we are standing in front of a brick wall.

Got to keep taking it day by day.  An answer will come, and we will get through this! 

 

 

 

We had the same thing happen.  My daughter is 13 and had her first seizure in October 2008.  I asked to leave after 3 days.  They eliminated her Keppra but kept her on Depakote.  After being home for 5 days she had two seizures in 24 hours.  Go figure.  LTM is extremely hard to get through and the staff were so cold ;distant. 

I am going to look into a neuro at a level four facility.  There is one about an hour from where we go now. 

Now we are on Depakote 500mg morning  250mg lunch 500mg bedtime.  She is so tired!  She has missed so much school also.  It is a hard hard life for these kids.  I also feel like we are standing in front of a brick wall.

Got to keep taking it day by day.  An answer will come, and we will get through this! 

 

 

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