hi all, my son had a grand mal seizure at 4. He was not sick and did not have a fever. he just woke up one morning and had a grand mal seizure. He's never had another one. He is now 9 years old and weighs 65 pounds. He's on trileptal twice daily, 150 mg morning and another in the evening. anyway, we do EEG's 1x a year. they always come out w spikes. so i went to the neuro today and he said we had 3 choices 1) stop giving him Trileptal and hope that he doesn't have another seizure since he only had 1 and has not had a recurrence in 5 years 2) keep doing the same thing since he has not had another recurrence which is 150mg Trileptal in the morning and another in the evening or 3) increase his dosage to 300mg in the morning and 300mg in the evening which is the dosage he is supposed to be taking. he said either decision would be fine since he has not had a recurrence in 5 years. it's a tough call bc his EEG still shows spikes. it's a risk to take him off the meds bc he may have a recurrence but we'll never know if we don't try. from my side, i don't want another seizure, but i also don't like him on meds. he's been on the them 5 years and he's never had another seizure. it's a difficult decision for me. just wanted to get your advice. thanks!
> hi all, my son had a grand mal seizure at 4. He was not sick and did > not have a fever. he just woke up one morning and had a grand mal > seizure. He's never had another one. He is now 9 years old and weighs > 65 pounds. He's on trileptal twice daily, 150 mg morning and another > in the evening. anyway, we do EEG's 1x a year. they always come out w > spikes. so i went to the neuro today and he said we had 3 choices 1) > stop giving him Trileptal and hope that he doesn't have another > seizure since he only had 1 and has not had a recurrence in 5 years 2) > keep doing the same thing since he has not had another recurrence > which is 150mg Trileptal in the morning and another in the evening or > 3) increase his dosage to 300mg in the morning and 300mg in the > evening which is the dosage he is supposed to be taking. he said > either decision would be fine since he has not had a recurrence in 5 > years. it's a tough call bc his EEG still shows spikes. it's a risk > to take him off the meds bc he may have a recurrence but we'll never > know if we don't try. from my side, i don't want another seizure, but > i also don't like him on meds. he's been on the them 5 years and he's > never had another seizure. it's a difficult decision for me. just > wanted to get your advice. thanks!
This group hasn't been very active for more than 6 months. There used to also be a uk group -- poss uk.sci.epilepsy? (a guess), that was also not as active. I haven't used Trileptal, nor have Medical training, but if he's still showing spikes on EEG wouldn't the Dr. recommend staying at dose he's at? (assumes he's not having szrs. *now while at the doses you listed?) I don't know what value would be of Upping the dose, if he's 'just' showing spikes but hasn't had symptoms? or seizures since you've had him at that level? Some of the medications if the dose is too high for age/ metabolism rate, *that can cause side effects that may not be desirable either (lethargy, mood effects, etc.) . In any event (until someone shows up with *experience with that pill they can share), any reductions etc. should be done with the Doctor's help, as prompt or unsupervised stopping of some of these can cause side effects themselves that we don't want either.... Not a lot of help, sorry about that, but just some thoughts I had when I saw your posts. G./ (Also this is an international group, so if some of the regulars from about 12 timezones don't read the group every day, you could check here in case some of them are still around and have more useful comments. )
> hi all, my son had a grand mal seizure at 4. He was not sick and did > not have a fever. he just woke up one morning and had a grand mal > seizure. He's never had another one.
Oops !! I think the uk group name was something like uk.people.support.epilepsy. If you try a Google search it might find the correct one. I think there was another (North America?) group that Google might find if you tell it Subject (versus name) contained Epilepsy (or epilepsy) in it. There were also another 2-3 ones Howdy Dave (one of the founders of This Group) posted about a year ago, if you search on His name within this group? where he listed another 2-3 groups that didn't contain *any reference in the group name to epilepsy or seizures. I hadn't been active on most of the groups for a long time, so didn't go *try the other groups. I *might have an old post filed somewhere if you can't locate anything within This Group's history file, and want me to search my olde folders in case I have some of those still filed. It might take a few days as I have a bunch of things (unrelated) occupying my time right now. I *did do a post about 5? months ago with Title similar to "Groups of use to newer people" that list about 5 older links, plus the Idaho Website and links to Charts with First Aid for Seizures, one on land, another if it's in water. G./
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