The good news is Josh had a full-blown seizure in the middle of the night, at about 1 a.m. It started out as a partial seizure and then expanded to a generalized tonic-clonic seizure (aka grand mal). He has had only three tonic-clonic seizures in his life and none since he began taking Felbatol in January 2009. It is likely that the build-up of not having a seizure for 11 days caused the partial seizure to "generalize," something the docs call a secondary generalized tonic-clonic seizure.
The bad news is there was no distinct focal point for the seizure. Dr. Carlson, who is the EEG expert, said it began for a fraction of a second on the right side, but then spread to a large part on both the left and right sides.
We are hoping now for more seizures, which will yield more information. But the decisions and issues from here become very complicated. It's not just about having a seizure or not.
If the data does not change, the choice would be to "do no harm," remove the electrodes, and not do a resection; or remove parts of the right brain with the possibility of reducing only a portion -- less than 50 percent -- of Josh's seizures.
We have a lot to think about and mull over today and for the next few days.
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Arghhh, the irony is that Josh can't have his "normal" seizures under such abnormal circumstances. I'm praying that Josh will have his "normal" seizure so you can make the best decision. I hope you found some peace and comfort during the day. I'll be away for most of the week, but you'll be in my prayers.
ReplyDeleteJulie xoxxoo
We continue to send love and healing thoughts— both personally and from the local congregation— for good decisions and great results
ReplyDeletewe're really pulling for you - we know how agonizing the decisions are AFTER the data - that may have been the most stressful part for us.
ReplyDeletewe're keeping you in our prayers.
Steph, Andy, Lincoln and Eva Murphy
Hang in there. We continue to pull for you all. Give me a call if a meal or anything else would help. -- JH
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