My 9 year old son has Epilepsy! Stopping Medications ??? Posted: 09-01-07 05:25am
Hi, i am new to this forum and i just need
to ask about stopping meds, My 9 year old
son started having absence siezures when
he was 4, and when he was 5 he started
with tonic clonic siezures, then atonic
siezures. I have lost count of how many
different combinations of drugs he has
tried, Many of the drugs have helped one
thing short term but have caused him to
have increases in other siezure types! Now
he is on epillim, clobazam and
Stiripentol, He has very little quality of
life at the moment because he is sleeping
all the time and he can't concentrate for
more than 2 minutes at a time, I would
like to wean him off all his meds and and
give his body time to adjust being without
the meds, I just feel that maybe he would
do better without them as the side affects
of the drugs are so extreme, I will just
try to keep him on a very low dose of
epillim and see how it goes. Has anyone
else tried this? I will of course make
sure that his neurologist knows of my
wishes for his treatment. thanks for
listening. sue
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
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Posted: 09-08-07 15:35pm
Talk this over with the neurologist, but
do not be surprised if he does not want to
go along with your plan.
Have you ever had a long Video EEG?
My son was taken off medication for a time
during a misdiagnosis and it caused
seizures to become more difficult to
control. I know that the side effects from
the medications are very hard to cope with
and frustrating on top of the seizures.
Having the seizures are also going to
interfere with his learning, however.
Is he currently having active seizures?
Usually they will not wean off medications
unless he is seizure free for 1-2 years
with a clear eeg. Sometimes during a VEEG
they will stop medication and try again
with a new medication that might be a
better choice. I know you have tried many
and the combinations. It is so
frustrating. We have also been at this for
over half my son's life, almost 9 years.
Hang in there. I hope your neuro can come
up with something to help him.
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