After a beautiful weaning off Depakote, tapering off the medicine for four weeks then another week of none, all with no seizures and no auras*, David had a seizure Sunday afternoon while playing ultimate frisbee on the church campus, then another one today around noon. We are adding Klonopin to his meds which will hopefully help. It may make him pretty groggy but we just have to make it to May 20. Please pray that he won't have such frequent seizures that we have to have him go back on Depakote or delay the phase 2.
Thanks--
Beth/Mom
*Auras are a warning feeling preceding a seizure and sometimes they don't develop. For David they usually mean he is not very resilient and may have a seizure before long.
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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
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2008
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April
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- Trouble commenting?
- Someone's Prayin', Lord...
- Give Thanks in All Conditions
- More
- Another flare-up
- A Seizure Last Night, But Feeling OK
- New prescription
- Next up...
- Two Seizures, Calming Down
- Two more good days
- Another quiet day and night!!
- All Quiet
- Seizure day
- Phase two in May
- Goodbye to Depakote
- Phases of pre surgery testing
- History of David's epilepsy
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April
(17)
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.
1 comment:
Got your email praying for you and believing that God will deliver David from damaging seizures and will bring peace to all in family and allow the prep for May hospitalizaton to continue.
Ann & Frank Meade
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