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Seeking help from PC veterans

Wed, 06/27/2007 - 23:35
Hello, I am new to the group and recently posted this on the new forum but have not had many responses. I have been trying to cope with my 3 year old son's epilepsy for the past year but I am getting frustrated trying to piece all of the strange symptoms together. I would really like to hear from adults that have epilepsy especially, partial complex as a way of figuring out what is happening with my son. I won't go into our entire story, but he was diagnosed one year ago after a >30 minute PC that resulted in a 4 day stay at the ICU of a children's hospital. In retrosepect he probably had seizures that were unrecognized by me, when he was a baby. After a couple more seizures last year, I relented and started him on Trileptal. I did not want to start meds-I was afraid of them. He has done well for about five months then had a PC three weeks ago at which time his night time dose was increased. This week early am (most of his seizures have been upon waking) he yelled out from his room "Mommy I can't get out of my bed!" and I find him thrashing around in his bed. He is also burning hot with a temp of 105.2. I got the fever under control and took him to the family doctor. My son was 100% normal by then and the fever never returned without medication of any kind after the initial dose of Ibuprofen. He has never had a febrile seizure before. The neurologist tells me that she is not sure the seizure that I observed was actually a seizure at all since my son could speak and she has no explanation for the transient VERY high fever. I asked, "What did I see then???" She says maybe a partial simple? Several times this week my boy has told me that "the sun is buring my eyes" this lasts for a few seconds and has been when he is watching TV twice at night and then once during the day. We just got a new and larger TV. 1.Could the tv be triggering something and is this part of his epilepsy? 2.Have any of you had tonic/clonic like motions and remained conscious? 3. Ever had any high unexplained transient fevers AFTER a seizure? I wonder if in many of the kids labled with febrile seizures, the fever came on after the actual seizure? vs the fever causing the seizure? 4. Do you have nocturnal issues? My son will have many nights per month when he wakes up and wanders around the house. Sometimes he cries and acts terrified and does weird things like turns on every light in the house. Sometimes this happen three times in one night!We are having a 24 hr/EEG performed tomorrow. 5. We have lots of issues with my son's behavior. Some days he is so aggressive, angry, and unhappy. I call him my Dr. Jekyll and Mr. Hyde. He seems very out of control of his behavior-like a mean drunk. Is this part of the PC seizures? Any of your experiences will help because right now I feel like my son cannot tell me what is going on and adults with similar epilepsy may be my communication link to his world. Thanks! Cheryl

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