Strokes and seizures...seizures and strokes...what came first, the chicken or the egg? We dont know. When we were first told that Christian suffered a very large stroke {Arterial Ischemic Stroke- middle cerebral artery- left acute} we were obviously shocked. The doctors sat Brian and I down and showed us the part of his brain that had died off due to lack of oxygen and what he would struggle with the rest of his life. Everything that they were describing to us were the things that he has already struggled with his entire life. So that was the first peculiar thing. After he suffered his grand mal seizure, which we were told was due to the swelling from the stroke, he was hooked up to the EEG machine to see if anything else was still happening. We immediately found out that he was having subclinical {the kind you dont see} seizures pretty much all day. We were seeing some small clinical seizures {eye gaze, slightly slurred speech and spacey}. Our neurologist, a wonderful man, decided that he wanted to treat the child and not the tests so we focused on getting his seizure meds just right to treat those small clinical seizures and to decrease the subclinical ones. Since we had been seeing those seizure signs his whole life {the ones where I thought he was just distracted} the doctor decided to just get him stable and wed worry about the subclinical ones later. We got the right dosage and timing and we were getting ready to be discharged but we stayed overnight one last night ONLY to make sure that the oral dose of his medication worked just as well as the IV dose he had been getting. The ONLY reason we would change our plan was if there was a HUGE SPIKE IN SUBCLINICAL OR CLINICAL SEIZURES after we switched to oral medication. Over night, our doctor got off and a new doc came on. She looked at the EEG and saw the subclinical seizures and decided she wanted to stop them 100%. She wanted him to be loaded with Dilantin to stop them completely and then Dilantin would be added to our seizure medication short term until his long term med was at therapeutic level. So when they came down to tell us this new plan, I was under the impression that when we switched to oral overnight, they saw an increase in seizure activity {again, that was the only way the plan was going to change}. So Christian was loaded with dilantin and tested at a toxic dose and experienced every side effect known to man. It was the scariest moment in the hospital because at the time we didnt know if it was a reaction to the dilantin or another stroke! He was rushed down for another CT scan with some more extensive testing and everything was ruled out so we knew {I knew the whole time} that it was the Dilantin. AND it didnt even touch the subclinical seizures and the new neurologist was shocked. THEN she wanted to load him with a NEW med that she had only used twice so far in her practice and thats when I PUMPED the brakes and told her that I didnt trust her and we were absolutely NOT putting anything else into his body. Then I asked the other docs what was seen overnight? was there even an increase in seizures? No one knew....I made them track the information down and I found out that there was NO change after we switched to the oral. We could have gone home. This new doc just swooped in and wanted to treat the tests and not my child. It was very overwhelming because he was FINE before this drastic decision. I insisted on talking to my previous neurologist and I insisted on getting him back to his original regimen. It took three days to get things balanced again but we got him back on the original plan. The sad thing is that Christian is now still dealing with the side efects of the dilantin. He could walk independently before the dilantin and now he needs a walker. Weve decided not to dwell but Im sure you can understand how frustrating this was. Our doctor thinks that when Christian was 15 months {remember in my blog when he got sick and stopped walking?} he suffered his first small stroke. They also think that hes had a seizure disorder his entire life. Everything we did to help autism was basically recovering him from a stroke. He also could have had a small valve/artery so that part of the brain was slowly being deprived of oxygen over time, finally resulting in a huge stroke. His brain has adapted during the last 10 years. What we dont know is....did the seizure disorder cause the stroke or did the stroke cause the seizure disorder. Did the blood clotting markers cause the stroke or is that just a coincidence? We are going to continue to see the neurologist we love and we are also going to a neurologist at Childrens who specializes in strokes....and of course well be seeing Dr. Green soon as well. Im sure a lot will unfold and hopefully well get more answers. Until then, Christian will have speech therapy, occupational therapy, physical therapy and vision therapy. The severity of the stroke left him with no vision on the right side of each eye {his biggest deficit} and the dilantin effeced his walking ability. Hell also need help with motor planning, speech and strengthening his right side but overall, hes doing great and we expect an almost full recovery.
Posted on: Sat, 12 Jul 2014 14:40:13 +0000
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