Guest guest Posted March 26, 2005 Report Share Posted March 26, 2005 Hi everyone, My 8 year old son Craig has taken a downward turn in the last month. I think he is having seizures again, but starting to wonder if they could be strokelike events instead? Or maybe both? He has so many strange neurological symptoms that come and go. This morning he could not move his mouth or swallow for a few minutes. He was completely paralyzed in that area. Yesterday, he could not move his legs, and the other day just one leg. He is having severe ataxia, times when he cannot walk, crawl or sit up (he is normally mobile, although his gait is awkward), extreme hyperactivity, difficulty talking (even more than usual), leg jerks, double vision, occasional pain in his legs, the list goes on and on. He looks tired and " out-of- it " often, and a few times has been truly altered while losing motor control- these are the seizures, I think. (A lot of the other symptoms have been recorded while on EEG and did not correlate to seizures before.) His current neurologist is not convinced that he has ever had seizures because she has never caught any seizure activity on an EEG. Craig has been doing so much better since we started seeing her. He did have a five hour EEG the other day, but he did not have a single episode while we were there. The EEG came out normal. She was not around when he was first diagnosed, and I need to show her the video footage from that time. I already faxed over the EEG results from that time, but her fellow said they show " epileptic form activity " and not full-blown seizures. Craig has never been tested for MELAS. He has an unspecified mito disorder, and Dr. Cohen did not think he fit any known category, although said he was " open to correction " . He has never had high lactate in his blood (a spinal tap was never done). He had a normal MRI when he was five. He had a normal CT scan too when he was 6. I am at a loss as to what to do for Craig. He is having so many neurological " attacks. " Could SLE's be involved, even though he doesn't fit a lot of the criteria? He does have a lot of brain involvement, cognitively/behaviorally, like some with MELAS. Is it possible Dr. Cohen could have missed something because of Craig's unusual presentation? (I have the upmost respect for him and think he would have tested for MELAS if there was any possibility of Craig having it. ) The doctor refuses (speaking through nurses and the fellow on call, not yet directly) to put Craig back on seizures meds without documenting some seizure activity (following her advice, we weaned him off when he was doing so well for the past several months ). I am pretty convinced he is having some seizures, at least once a week. He looks just how he looked before he ever started on seizure meds, and we lost a lot of ground before his previous doctor discovered he was having seizures (or so she thought?). He was on Trileptal for over a year, and it seemed to work well with no side effects. He did have breakthrough " seizures " every couple/few months and the doctor upped the dose a little each time. We have some Trileptal left over from before he came off, and we have started using it anyway. It was a difficult decision, but we cannot just wait for him to have more seizures and let them go untreated. I cannot understand why the doctor is so opposed to using it again, and not more concerned about leaving the seizures untreated. I let the doctor's office know my decision. I will talk directly to the doctor soon about it. Could there be any other explanation for the altered state of consciousness Craig gets sometimes besides seizures? Or SLE's? Any insight is so appreciated. Donna Quote Link to comment Share on other sites More sharing options...
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