I haven't shared that much info on here about what is going on with Blaze. Over the last few months, Blaze's seizures have increased. He is having seizures almost every day now. He has been to the hospital/ required rescue meds 7 times in the last 6 weeks . We've adjusted meds, maxed out meds, changed meds, etc and the seizures just aren't stopping. He has failed multiple meds and is currently on 4 seizure meds. Somedays he has none and other days as many as 1-30 a day. His doctor sent him for a CT scan and also a MRI. The results came back and showed significant changes to Blaze's brain including new lesions not seen in the previous MRI, that we had done last year. Our neuro decided it was time for us to start discussing other options for Blaze. She gave us a referral to an epileptologist at CHOA. Blaze has been diagnosed with multiple types of seizures but almost all of these last tests seem to show that most of the seizures start in the left side of his brain. The left temporal area and hippocampus area and spread from there. After this last round of testing, he was DXd with mesial temporal lobe epilepsy (intractable) and hippocampal sclerosis. The epileptologist basically said that Blaze will not get better without surgery because it's a progressive condition. He is going to have to have surgery. We started phase one of the testing a few weeks ago and next week he will be admitted to start phase two. It takes a lot of testing and studies before they can decide if surgery is a possibility. So far, the doctors seem to think that Blaze he will be a good candidate. It may not stop all of his seizures but it might. Without surgery, she gives Blaze a less than 10% chance that he will get better on meds alone. Due to the new lesions, they just expect that the seizures will continue and get more frequent and possibly cause even more damage to the brain. The question is what type surgery? Can it be a more simpler laser type surgery or will they have to open up the whole side of his head? Will they remove the hippocampus or the left temporal area? How will he be affected by the surgery and removal?... We don't know. That's why he is undergoing all of this testing. We need to see exactly what those areas of his brain control. Then we have to decide if it's safe or to risky. It's so much to take in and almost overwhelming. I am scared... very scared. Blaze needs lots of prayers. We all do including the doctors who are making these big decisions. To learn more click here.
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