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At the Cleveland Clinic Now

3/4/2013

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We arrived in Cleveland on Thursday, February, 2013.  After running though the Dallas airport, we made our flight right at departing time, they waited for us!! Unfortunately as we were settling in, JW went into a complex partial seizure. It was only about 4 minutes long and he slept the rest of the plane ride there. The rest of the night was uneventful and we met with the epileptologist on Friday morning.  We were impressed with him as he was very direct, specific and thorough.  We then went off to check in for the MRI.  We were early and keeping JW occupied was a task to say the least.  We got called back and as they were prepping him for the MRI he went into a complex partial again.  He then went to sleep so moving him and getting him sedated was easier as well.  We wish he would have held off on these seizures till he was hooked up, but obviously, you can't control epilepsy.  After the MRI we were sent upstairs and hooked up to the video eeg.  That is where we have been and no seizures yet.  He is off of his Trileptal completely and we have sleep deprived him.  So now it is just a waiting game.  We have a Pet scan scheduled for 11 tomorrow and we won't have results till Wednesday. The pet scan will hopefully tell us the "hot spots" of the brain, where seizures are happening. The place that showed up on MRI may be scar tissue or may just be showing the area where his seizure occurred before the MRI. He has not had a seizure but the eeg shows activity on the left side and wide spread. With all the tests they will determine if he has focal epilepsy (activity in one area) or generalized epilepsy (all over) or both. Figuring this out will help pick medicine and determine if he's a surgical candidate in the future. I say future because everyone feels like we still have options with medicine since we have only tried one. If we can control with medicine or an alternative method that would be ideal. We will know more on Wednesday and Thursday is the soonest we would be discharged. Thank you for your prayers and support.
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