Trileptal makes my 5 year old behave bad

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calberto22 - 05 Dec 2005 02:11 GMT

Hi all, it's me again. I wrote a few weeks ago about my 5 year old who
had
a grand mal seizure for the first time 7 months ago (he's been seizure
free since).
Thanks for your replies, i had another question. i just noticed that
right after he has his medication, Trileptal, he is really badly
behaved.
He's generally a very normal and pretty well behaved 5 year old boy.
but yesterday, we went to a restaurant right after he had his
trileptal,
and he was SO BAD it was embarrasing! then today, right after he had
his
meds, we went to the mall and was SO bad. i started looking back and
realizing a pattern. i feel bad for coming down hard on him, i told him

"2 days no tv", etc. i've been punishing when he behaves badly and
now i realize it may not be under his control. however, he needs to
take this medication. of course, he only had one seizure, but it was a
big one.
and the doctor said he wanted him on medication for at least 2 years in
order to try
and avoid any more. then in 2 years, if he's seizure free, we could
try to see how it goes without the medication. He's taking 150mg in
the morning and 150mg at night. i HATE that he's on the medication,
but i'm concerned that if i don't give it to him, he will have another
seizure. btw, he had his first ONLY seizure about 7 months ago and has

never had another one.

i would just take him off the meds but there is one weird thing about
my son, i wanted to share it with you in case any of you knew about it.

He rocks his head side to side all the time. he's not autistic, he's
a perfectly normal 5 year old. but he was premature. He's very social

and very good in school. but he does rock his head side to
side a lot. the neuro says he just thinks is soothing for him. it's
not a tick, it's just like rocking slowly, kind of like Stevie Wonder
does, you know? he doesn't do it all the time, but mostly when he's
concentrating on something or when he's stressed out. sometimes i
wonder if doing this a lot may cause a seizure. i sometimes try moving

my head like him and after a few minutes, i get dizzy! i think i'd
have a seizure too if i did that as much as he did. i commented it to
the neuro who said not to worry about it. he seems to think it's just
a habit that he'll grow out of. but he's seen him do it and admits
it's strange. he thinks he's "self stimulating". he does it mostly to

relax when he's nervous.

any tips or thoughts from you guys?

thanks!

Reply to this Message

G.Ross - 05 Dec 2005 05:16 GMT

> Hi all, it's me again. I wrote a few weeks ago about my 5 year old who
> had
[quoted text clipped - 8 lines]
> meds, we went to the mall and was SO bad. i started looking back and
> realizing a pattern. i feel bad for coming down hard on him, i told him

*** I didn't reply to your earlier note? since I don't have experience with
his med. You could ask the pharmacist, but I'd be *very surprised if it
would start a Physical reaction as quick as above.
Alternatively you could ask the pharmacy (or look at http://efa.org
medications glossary) if the med. should be taken with milk, food or juice,
and if there are any things to *not take it with. Most of our pills need a
buffer of some kind to help the digestion or absorption downstream of the
stomach, to get it into the bloodstream without peaks and valleys in the
dose level.
If it's a powder or solid tablet, you could even ask them if you could
crush it and 'hide' it inside the morning cereal, or yoghurt in evening.
Sneaky, but if that's the only way to get the dose you need, whatever might
work. Several of the Anti Ep Meds. depend on a *fixed dose rate, so if the
Dr. has set a particular rate and plans to do bloodwork in a month or two,
they will assume he's taking it as directed. *If the blood level is below
what they expected, they might raise the dose to try reach target, and if
level is low because of missed doses, then he could end up over-medicated.

> "2 days no tv", etc. i've been punishing when he behaves badly and
> now i realize it may not be under his control. however, he needs to
> take this medication. of course, he only had one seizure, but it was a
> big one.
> and the doctor said he wanted him on medication for at least 2 years in
> order to try and avoid any more.

*** Only problem with above approach is he will then associate *any
medications, for whatever reasons, as something to avoid. That would
include cold medicines or any other pills he might need if the type of
seizures were e.g. to change as he got older, vs. disappearing.
Similarly if he's not supervised as he's taking the pills, and doesn't
want them, he could discard them when others are not watching, if he
develops a negative attitude toward the pills. /

then in 2 years, if he's seizure free, we could

> try to see how it goes without the medication. He's taking 150mg in
> the morning and 150mg at night. i HATE that he's on the medication,
> but i'm concerned that if i don't give it to him, he will have another
> seizure. btw, he had his first ONLY seizure about 7 months ago and has
> never had another one.

*** Did the Dr. do any tests before prescribing the med.-- EEG's, MRI's
etc.or did they just go by your description of the one? Were there any other
things around that time-- school immunizations or other things that might
have contributed to first one, or did the Dr. suggest where it came from?

> i would just take him off the meds but there is one weird thing about
> my son, i wanted to share it with you in case any of you knew about it.
[quoted text clipped - 13 lines]
> it's strange. he thinks he's "self stimulating". he does it mostly to
> relax when he's nervous.

** I had a kid in Grade 2 (50+ years ago) who was mad a me for 'sticking my
tongue out at him' in class. Someone told him it was just a habit, which I
had no idea what a habit was, as I was doing my Math. I wasn't having
seizures then.
You might be watching him more, after his one seizure, and things that
likely wouldn't affect seizures are being noticed (by you). Unless they
seem to cause loss of balance or other effects, they are probably just
things he does to aid concentration, and not a problem./ G.

> any tips or thoughts from you guys?
> thanks!

Reply to this Message

Sofia - 05 Dec 2005 16:24 GMT

> You might be watching him more, after his one seizure, and things that
> likely wouldn't affect seizures are being noticed (by you). Unless they
> seem to cause loss of balance or other effects, they are probably just
> things he does to aid concentration, and not a problem./ G.

In my experience, the only things that have caused me to have loss of
balance during my life with epilepsy, were either having a completely
wrong combination of drugs for me, or the after effects of having
several seizures in a very short space of time.

For me though, rocking back and forth for hours on end is a very
common part of my life, and I doubt I'm not the only one, or that
it is anything particularly to worry about. I rock back and forth
whilst watching TV, standing around washing the dishes, and even
now, while writing this letter. I'm not particularly concentrating
on anything in particular, in fact, most of the time, I don't even
know I'm doing it until somebody like hubby points it out to me.
I think it's a little like having an absence, where you don't
actually know you're in one unless somebody tells you.

All the best

Sofie
I'm doing it

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