We are back in Kansas and getting settled in. JW had an MRI, PET scan and video EEG monitoring for 7 days. The MRI was abnormal but that was due to the fact that he had a seizure prior to it. There still is a possibility he may have a small amount of scar tissue, but to be sure, they would need to do a biopsy and that would be too invasive to do for how small it could be right now. Him having the seizure right before the MRI is what is making it hard to tell, we can do another MRI in a year and if there are more changes then we would have an answer as well. The diagnosis right now is generalized epilepsy and they based this off of the electrical activity shown on his EEG. He does have complex partial seizures (generally classified as focal epilepsy) and tonic clonics (generally classified as generalized epilepsy so this is not a definite diagnosis. The activity showed up all over his brain, meaning that the seizures could start at an given point the brain and with his history, they can stay in that area or move all over the brain. Since he didn't have a seizure, they do not have the information to confirm where the seizures start and spread to. This is beyond everyone's control and we can't have him produce a seizure when we need it. We agreed to treat him with the current diagnosis and that meant changing his medicine to Keppra which is used for generalized epilepsy. The Tripletpal is generally used for focal epilepsy and that is what could have been causing his seizures to increase. We are going to give this a try and if his seizures do not get better, then we would go back for another EEG study. That is an important piece of information they need. Unfortunately, we can't keep him in the hospital long enough to catch one right now and we don't want to. So if they get to be a frequency of 1 per week again, then we would go back and see what changes need to be made. We still need to use a neurologist locally as they feel the distance is too great to treat on a regular basis. They will however work with whomever we choose and pass this information and plan along to them to follow. So our next step is to find a neurologist (again) close by that is willing to work with Cleveland. We are also still waiting on the genetic testing results that we did before going. The results would not be a game changer on diagnosis, but could narrow the gap of finding the type of epilepsy he has. The treatment would still be the same as long as it was working. We do not have to restrict him from anything specific, just take caution with certain activities and an extra close eye while swimming. Joe and I feel very grateful that we were able to take JW to the Cleveland Clinic. We feel that we are in a much better place and our intuition was right, he was not being treated correctly. We are on the right track and narrowing the gap of all the possible types and treatments. We could not have made the trip without the generous donations made by our friends and family. Thank you all so much for your support!
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.