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.
On Tuesday, February 12, JW had a seizure and 5 minutes into it I administered Diastat (valium) and rushed him to the ER. He needed to be monitored overnight and the ER doctor felt they could not safely do that so they transferred him by plane to Children's Mercy in KC. They only wanted to monitor him from the seizure and diastat given. We pushed for an EEG and they refused. He was not himself Wednesday, he was very lethargic, slurring words, thoughts were delayed and his face just didn't look right. Then on Thursday when I insisted, they finally hooked him up that afternoon. He was hooked up for 24 hours and the results showed no seizure activity. We did speak to the neurologist about our concerns of his seizures being fever and heat related and she ordered genetic testing for a specific type of epilepsy. It is called generalized epilepsy with febrile seizures plus and we will not know the results for about a month. We also discussed with the neurologist our feelings that his Trileptal was not working and/or causing his seizures to increase. We are not ready to try a new medicine till we get better answers from Cleveland. So it was decided that we could at least wean him down to a level of the Trileptal before his activity increased. This is what we will do till a new medication is decided and a clear diagnosis is made.
While we were at Children's Mercy, I contacted the Cleveland Clinic and explained what was going on. They bumped us up on the scheduling list and we have been scheduled for a panel of tests on March 1. So we are beyond anxious to see a specialist and hopefully get some answers. The appointments are only two weeks away so we are going to have to come up with some funds pretty quick. If you are interested in helping, please check out the Fundraising tab. Any amount will help. Thank you for your prayers and support.
Yesterday I received a call from The Cleveland Clinic that they had finally received JW's medical records. Now, the Dr. we have requested will need to review all of those and decide if he will take JW on as a patient and what appointments will need to be made. This may take a week and then they will call us for scheduling. We are excited to hear back as this request is for an epileptologist which is a neurologist specializing in seizures and epilepsy. His name is Dr. Lachhwani and he also specializes in febrile seizures. We are hoping to hear soon, as JW's seizures are still becoming more frequent. Thank you for your support and we will keep you updated :)