son on Trileptal - advice needed
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!
G.
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. )
G.
> 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./
Sofia
"G." <gar...@rogers.com> wrote:
> 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?
I don't know much about the epilepsy support groups Howdy Dave belongs
to, but the biggest one here in the UK is the NSE (National Society of
Epilepsy).
If you do live here in the UK and wish to contact them, they are on...
www. epilepsynse.org.uk
Hope that helps
Sofie
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