seizures after lobectomy

my son was having 100+ seizures a day since birth, at 4 months of age he had epilepsy surgery to remove his right temporal lobe.  he was seizure free for 8 months, but has started them again.  they are no where near the frequency, only one every 5 days.  since it was 8 months later is this from tissue damage or is this something else.  EEG are clear, no concerns.  the seizure only happen when he is falling asleep.  any advice would be great. 

kason's last VEEG was 3 weeks ago - he didn't sz though.  they left it on for a really long period of time.  we haven't put him in the monitoring unit at childrens since surgery - we might do that.  But since he only szs once a week it might take 2 weeks to get the info they need.  when they told me that - i thought i would be the one having the sz after that.  its very hard to be in the unit. 

kason has been on every med he can - he doesn't respond to them, the last one we were on is trileptal - we weened him off because it wasn't doing anything and the side effects were worse according to the dr.  he is only 19 months old so his meds are limited.  but he has been on, phenobarb, dylantin, tegritol, trileptal, zonegran, depakote.  we are running out of options with meds.  he had infantile spasms before surgery and those aren't controled by meds and are very damaging - with the condition we were in before they only gave him 6 mo to live.  we are better now but i don't want him to have any szs at all, especially since meds don't seem to cover them at all.  after his szs, he does this jerking thing that look like he is doing crunches or sit ups.  that to me looks like the infantile spasms again.  i asked the dr and he said that when you have those there is abnormalities in the background of the EEG and kason's are completely clear. 

we are at a loss to know what he is doing.  another thought that came was night terrors and since he has neuro issues he will just take that position.  any thoughts on that one????

Hello,

Gosh, I know what you are talking about.
I had a Rt. temporal lobe labectomy in 1998
and and since then two other surgeries.
In 98 I was having about 50 plus seizures
a day. I went two years without a seizure.
Once they returned I had the implant
called the Vagus Nerve Stimulator
implanted. That helped for two years,
and then stopped and I had two more
brain surgeries in 2002. I went almost
four years without a seizure.
Now I am going into the hospital in two
week for video EEG monitoring to find
out what is happening. I have been
through Hell and back you could say.
I have been on every medication
available and have tried everything.
When I went to my neuro. at the
begining of the month she said because
of my brain surgeries we have to start
from scratch as if I were just diagnosed
with epilepsy. I have had epilepsy for
15 years now. And I am only 28.
It is so hard I know. And at this point
I am not sure what I am going to do.
I will not allow anymore brain surgery
because I only have the left side of my
brain left now and there is Epilepsy
activity on the left side however if they
remove that I will never walk again.
I can't allow that. I am sorry to have
to cut this short but I have a meeting at
church in a few. If you would like to talk
back and forth I will give you my church
e-mail address. It is [email protected]
Please feel free to e-mail me. Been
there done that so to speak. Good luck
and I wish you all the best with this.

Blessings to you,

Kim