Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hi Hallie, My daughter is on the ketogenic diet and Lamictal only. We had been on the ketogenic diet about 2 months when we recently tried to increase her levels, she began to have night terrors. She'd wake up and be inconsolable for several times a night. When we went back to the old level, the night terrors subsided. You might try lowering the levels of lamictal back to what they were and see if the cluster seizures and trouble sleeping subside. At least you know what's causing it. As for trying to reduce the depakote, whenever you make any med change, I suggest doing one at a time and waiting to see the effect on the other drug. We recently weaned off trileptal and found that just by weaning one med, it automatically increased the levels of the other b/c of the interaction btw the two drugs. Good luck on your research and regaining seizure control. Regards, , Indigo 16 months, ketokid for 5 months now. > This was posted by my daughter on the Landau Kleffner site but I thought I would get your opinions on it also. > Thanks, > Hallie > > by Joanie, (my daughter) > My son Tanner has been taking Lamictal for about 6 months along with depakote.. His EEG on Oct. 20th showed very frequent seizures in his left temporal area of his brain. The neuro increased his lamictal from 20mg twice a day, to 30 mg twice a day (currently at 25mg twice a day). Tanner had not had any clinical seizures since starting the keto diet in July. His EEG in June showed constant seizures generalized to the whole brain, so we have seen improvement. After the increase in lamictal Tanner improved significantly in school, but then a week into the increase he began having cluster seizures and twice have had to use diazepam to stop them. I am wondering if it is the lamictal increase, but the neuro doesn't think so (hasn't seen this happen with Lamictal). I also asked about taking Tanner off depakote, but the doctor checked his level and said it was fine and that if we dc'd depakote he would have to increase lamictal significantly to get the same benefit from it. It's confusing to me that Tanner had such significant gains in school and at the same time started having clinical seizure activity. I am curious if anyone else has seen this with Lamictal. Tanner had a Lamictal level drawn yesterday but we won't have the results for a week. > > Thanks for any info. > Joanie > > Also he has appeared very emotional, crys easily, is not going to sleep as easily. > He had not had any seizures that showed without the EEG since July 1st. The last week he has had them every other day and has been given diazapam on the days he has them which stops the seizure but makes him bounce off the walls. He also had a flu shot a week ago. > His Grandma Hallie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Hi Joanie. Denis was on Lamictal last year for a while. I loved the fact that it seemed to help with his development. He was more alert and showed noticably more interest in the world. Lamictal is known as a drug that tends toward hyperactivity rather than sedation. Lamictal is also used to combat depression. So I think it's quite possible that the Lamictal may have helped Tanner's school performance. While on Lamictal, Denis' seizures increased. I was told by our neuros that British doctors are reporting that Lamictal doesn't always work immediately and that you have to be patient and continue slowly increasing until you gain control. They claim if you are patient, it can be a wonderful drug, especially because it has so few bad side effects compared to other medications. Several parents on my infantile spasms web group have confirmed this experience and are big advocates of the drug. Unfortunately, despite our patience, Denis never gained seizure control with Lamictal. His seizures continued and when we saw the return of hypsarrithmia (a very destructive brain wave pattern) on his eeg, we discontinued its use. Recently, a mother on my alternative therapy site wrote that her doctor believes Lamictal can indeed increase seizure activity in children. Finally, it seems to me that Tanner is on a pretty low dose of Lamictal. (Denis, at 18 months, got up to 90 mg per day before we quit and I know many kids who are on doses much higher.) Because of its lack of side effects, you may want to continue increasing several more times before you give up on it. Let me know if you would like, and I can e-mail you privately some of the responses from parents that I received when I was starting Denis on Lamictal. --Kasey, mother of Denis, 2.5 years > This was posted by my daughter on the Landau Kleffner site but I thought I would get your opinions on it also. > Thanks, > Hallie > > by Joanie, (my daughter) > My son Tanner has been taking Lamictal for about 6 months along with depakote.. His EEG on Oct. 20th showed very frequent seizures in his left temporal area of his brain. The neuro increased his lamictal from 20mg twice a day, to 30 mg twice a day (currently at 25mg twice a day). Tanner had not had any clinical seizures since starting the keto diet in July. His EEG in June showed constant seizures generalized to the whole brain, so we have seen improvement. After the increase in lamictal Tanner improved significantly in school, but then a week into the increase he began having cluster seizures and twice have had to use diazepam to stop them. I am wondering if it is the lamictal increase, but the neuro doesn't think so (hasn't seen this happen with Lamictal). I also asked about taking Tanner off depakote, but the doctor checked his level and said it was fine and that if we dc'd depakote he would have to increase lamictal significantly to get the same benefit from it. It's confusing to me that Tanner had such significant gains in school and at the same time started having clinical seizure activity. I am curious if anyone else has seen this with Lamictal. Tanner had a Lamictal level drawn yesterday but we won't have the results for a week. > > Thanks for any info. > Joanie > > Also he has appeared very emotional, crys easily, is not going to sleep as easily. > He had not had any seizures that showed without the EEG since July 1st. The last week he has had them every other day and has been given diazapam on the days he has them which stops the seizure but makes him bounce off the walls. He also had a flu shot a week ago. > His Grandma Hallie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 I was going to go through all the reasons why you should be doing things differently. But, after re-reading it a couple of times, the correct response is, " Find another neurologist. " Bill Hallie wrote: > This was posted by my daughter on the Landau Kleffner site but I > thought I would get your opinions on it also. Thanks, Hallie > > by Joanie, (my daughter) My son Tanner has been taking Lamictal for > about 6 months along with depakote.. His EEG on Oct. 20th showed very > frequent seizures in his left temporal area of his brain. The neuro > increased his lamictal from 20mg twice a day, to 30 mg twice a day > (currently at 25mg twice a day). Tanner had not had any clinical > seizures since starting the keto diet in July. His EEG in June showed > constant seizures generalized to the whole brain, so we have seen > improvement. After the increase in lamictal Tanner improved > significantly in school, but then a week into the increase he began > having cluster seizures and twice have had to use diazepam to stop > them. I am wondering if it is the lamictal increase, but the neuro > doesn't think so (hasn't seen this happen with Lamictal). I also > asked about taking Tanner off depakote, but the doctor checked his > level and said it was fine and that if we dc'd depakote he would have > to increase lamictal significantly to get the same benefit from it. > It's confusing to me that Tanner had such significant gains in school > and at the same time started having clinical seizure activity. I am > curious if anyone else has seen this with Lamictal. Tanner had a > Lamictal level drawn yesterday but we won't have the results for a > week. > > Thanks for any info. Joanie > > Also he has appeared very emotional, crys easily, is not going to > sleep as easily. He had not had any seizures that showed without the > EEG since July 1st. The last week he has had them every other day > and has been given diazapam on the days he has them which stops the > seizure but makes him bounce off the walls. He also had a flu shot a > week ago. His Grandma Hallie > > > > Quote Link to comment Share on other sites More sharing options...
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