Yow. Sunday's seizure seems to have started from deep in the frontal lobe. We have no idea what this means but it is not something we've heard about.
However, they keep telling us that they want several seizures before coming to a conclusion so it is too early to discuss this very much. At this point that sounds pretty good....
The Ativan drama goes on. I watched the video of David's seizure from Sunday. To me his seizure looked typical for him; a nurse had earlier said it was awful and I wouldn't be able to believe it! So what the nurses saw looked like something progressing dreadfully that needed medicating with Ativan. Before I realized there was such a disconnect I really pushed for delaying or reducing or substituting something else for it and it was a dead-end road. Late in the day David was able to communicate better to Dr Maleeva who said she would look into it. Hopefully they will be slower to administer that medicine as it seems to stop seizures for about 5 days in David, and we want more, sooner, while he is in the hospital.
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Pray for David
+Pray for no seizures and healing from epilepsy.
+Pray for no colds (often come with seizures), wisdom in matters of health.
+Thank God for the period of no seizures from July 31 2008 to July 7, 2009, even with one less medicine and his VNS implant being turned way low inadvertently.
+Thank God for a full recovery from the trauma caused by the grid on August 1 2008.
+Thank God for the period of no seizures from July 31 2008 to July 7, 2009, even with one less medicine and his VNS implant being turned way low inadvertently.
+Thank God for a full recovery from the trauma caused by the grid on August 1 2008.
+Thank God for strength during the first four semesters at college.
+Pray for strength and wisdom through the third year, taken from home.
+Thank God for three months with no seizures, from early August to early November '11
+Pray for that pattern, of no seizures or even auras, to resume and remain
Use the Blog Archive to start from the beginning of this record
Blog Archive
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2008
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May
(31)
- Hello from a night guardian
- They are twins!
- ANOTHER!
- Hmmmm
- A Little Correction, Update and Praise
- Waiting
- One Down, 2-4 to go.
- ONE SEIZURE!
- God and adrenaline
- Hands off
- Good night
- I love this job
- Good morning
- He ain't smilin' much
- Resting in the ICU
- He's out now and fine!!
- He's in now
- Eyes on the Prize
- On Track for Monday, cont.
- On track for Monday
- Better are five days like this
- A Little Help With a Mother's Day Gift?
- And More Smiles
- Smiles
- Eleven to go
- Thirteen days to go
- It Is Earlier...
- Might Be Tomorrow...
- Steady On
- Surprise Change of Plans
- Beautiful Sleep!
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May
(31)
My angel!
2008
WHAT'S UP WITH DAVID--updated 9/19/09
David was diagnosed with focal epilepsy in 2000.
He has tried seven meds and had a device implanted, but still has had seizures and side effects.
Since summer 2007 he has been on a track toward surgery, which can be very effective. In July 2008 we got to the final stage which is to have grid surgery.
Grid surgery on July 29 involved placing a silicone grid of electrodes directly on his brain. A cable connected his head to an EEG screen, and he stayed in his hospital room to have seizures. If the grid shows where seizures come from then usually the spot can be removed and the epilepsy is gone or alleviated greatly.
Things went wrong on August 1 when the grid turned out to be very irritating and caused a lot of fluid buildup and swelling so it had to be taken out in emergency surgery as David started slipping into a coma. The opportunity to do therapeutic surgery was lost for the time.
But things started going well as he had no seizures for 11 months and 1 week after coming out of the hospital. Things are really good because he (accidentally) started taking one less medicine, and because his vagal nerve stimulator was (accidentally) set way too low after surgery, and still no seizures. This is very unexpected so maybe the trauma altered something in his brain and healed his epilepsy.
Despite some bumps things are still going well, with very few seizures. After asking for the VNS to be turned down, then having many more auras, turning it back up, and having sleep trouble, he has had seven seizures since July 7, '09. However, each seizure has been gentler than the last, and a common denominator has been found in many of them - looking at computer/TV screens too long.
He has tried seven meds and had a device implanted, but still has had seizures and side effects.
Since summer 2007 he has been on a track toward surgery, which can be very effective. In July 2008 we got to the final stage which is to have grid surgery.
Grid surgery on July 29 involved placing a silicone grid of electrodes directly on his brain. A cable connected his head to an EEG screen, and he stayed in his hospital room to have seizures. If the grid shows where seizures come from then usually the spot can be removed and the epilepsy is gone or alleviated greatly.
Things went wrong on August 1 when the grid turned out to be very irritating and caused a lot of fluid buildup and swelling so it had to be taken out in emergency surgery as David started slipping into a coma. The opportunity to do therapeutic surgery was lost for the time.
But things started going well as he had no seizures for 11 months and 1 week after coming out of the hospital. Things are really good because he (accidentally) started taking one less medicine, and because his vagal nerve stimulator was (accidentally) set way too low after surgery, and still no seizures. This is very unexpected so maybe the trauma altered something in his brain and healed his epilepsy.
Despite some bumps things are still going well, with very few seizures. After asking for the VNS to be turned down, then having many more auras, turning it back up, and having sleep trouble, he has had seven seizures since July 7, '09. However, each seizure has been gentler than the last, and a common denominator has been found in many of them - looking at computer/TV screens too long.
3 comments:
Mr Nemati,
Your in my prayers, friend.
I love reading your blog,
Blessings,
-Mr. Perry
Thanks, Mr. Perry! : )
archive
Wednesday May 28: Still waiting for more seizures since the one on Sunday. David is feeling great. We are pressing for less Ativan after seizures as it takes to long to have another one, but we are not succeeding. Not very happy about this.
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