gavman
08-24-2003, 08:58 PM
Hello,
It's been quite a while since my last post so let me reintroduce myself. I'm a mother of four and have a 7yr old son w/TLE or so they tell me. We saw his neurologist last week. The doctor was ready to increase my sons medication (Depakote) because my son had grown enough to warrant a higher dose. He wanted to increase it even though my son has supposedly been seizure free for over two years. He was diagnosed
2 1/2yrs ago following one seizre. I think it is possible he is having small break through seizures, and another neurologist we took our son to for a second opinion agreed. Our current neurologist disagreed, because we have not seen "episodes" lasting several seconds. But we have seen changes in his behavior that have us wondering. After reading the book "Seizures and Epilepsy in Childhood" recommended by several posts, we are even more convinced. It said you could have a seizure lasting less than a second, and seen only on an EEG but still enough to cause disruption with brain function. I told the doctor I was not comfortable increasing the medication until we know whether or not he is in fact having seizures, however small they may be. I asked him why he wanted to increase the meds when he seemed to think my son is not having any seizures. Doesn't that mean the amount of medication is sufficient? He said because my son has grown, we should increase the medication to be sure he will remain seizure free. After reading the book, I know this is not uncommon, especially with Depakote. So I haven't lost all faith in our neurologist. We were able to convince him to order a viedo EEG before we increase the meds. He said we would come in in the afternoon and go home either in the morning or sometime during the night, if they were able to see anything on the EEG before morning. I've read that people often have normal video EEGs even after days of testing. So even if his is normal, I don't think I'll feel any better. But there is a chance it will show something. I'm not even sure what I'm trying to ask here. I guess I'm just trying to figure out if the problems my son has (which sound so much like those of you with TLE) are really caused by TLE or if he has other learning/comprehension difficulties that I can no longer blame on epilepsy. I feel like we really need to know, so I can find him the help he needs and be able to work with the school instead of just automatically increasing his medication. He will be starting first grade soon and I'm afraid he is just going to be left in the dust! Unless I'm able to get additional help for him,(he already receives O.T. and P.T.) he will really suffer and struggle this year. So for those of you out there who have had a vieo EEG, was it helpful? Do you think one lasting less than 24 hrs is enough, even if no abnormal activity is seen? It just seems like it will be helpful if we see something, but mean nothing if we don't. Any thoughts, opinions, words of advice, etc... would be very much appreciated. Thank you all for the time and care you take in your responses. You have been so helpful to me, so many times.
It's been quite a while since my last post so let me reintroduce myself. I'm a mother of four and have a 7yr old son w/TLE or so they tell me. We saw his neurologist last week. The doctor was ready to increase my sons medication (Depakote) because my son had grown enough to warrant a higher dose. He wanted to increase it even though my son has supposedly been seizure free for over two years. He was diagnosed
2 1/2yrs ago following one seizre. I think it is possible he is having small break through seizures, and another neurologist we took our son to for a second opinion agreed. Our current neurologist disagreed, because we have not seen "episodes" lasting several seconds. But we have seen changes in his behavior that have us wondering. After reading the book "Seizures and Epilepsy in Childhood" recommended by several posts, we are even more convinced. It said you could have a seizure lasting less than a second, and seen only on an EEG but still enough to cause disruption with brain function. I told the doctor I was not comfortable increasing the medication until we know whether or not he is in fact having seizures, however small they may be. I asked him why he wanted to increase the meds when he seemed to think my son is not having any seizures. Doesn't that mean the amount of medication is sufficient? He said because my son has grown, we should increase the medication to be sure he will remain seizure free. After reading the book, I know this is not uncommon, especially with Depakote. So I haven't lost all faith in our neurologist. We were able to convince him to order a viedo EEG before we increase the meds. He said we would come in in the afternoon and go home either in the morning or sometime during the night, if they were able to see anything on the EEG before morning. I've read that people often have normal video EEGs even after days of testing. So even if his is normal, I don't think I'll feel any better. But there is a chance it will show something. I'm not even sure what I'm trying to ask here. I guess I'm just trying to figure out if the problems my son has (which sound so much like those of you with TLE) are really caused by TLE or if he has other learning/comprehension difficulties that I can no longer blame on epilepsy. I feel like we really need to know, so I can find him the help he needs and be able to work with the school instead of just automatically increasing his medication. He will be starting first grade soon and I'm afraid he is just going to be left in the dust! Unless I'm able to get additional help for him,(he already receives O.T. and P.T.) he will really suffer and struggle this year. So for those of you out there who have had a vieo EEG, was it helpful? Do you think one lasting less than 24 hrs is enough, even if no abnormal activity is seen? It just seems like it will be helpful if we see something, but mean nothing if we don't. Any thoughts, opinions, words of advice, etc... would be very much appreciated. Thank you all for the time and care you take in your responses. You have been so helpful to me, so many times.