in my humble opinion, if he has seizure activity in the sleep stage,
wouldn't that justify keeping him on the meds for safety's sake?

Hi everyone:

Simply put, you should NEVER alter or go off your medication (Or do the same
with your child if it's prescribed for him) without first consulting with
the neurologist.  You could cause more harm than good by doing this.

It doesn't matter what your personal feelings are.  Epilepsy is NOTHING to
mess around with.

You see, I ought to know.  I was taken off Dilantin by my doctor (Who wasn't
even a neurologist BTW)  at the request of myself in agreement with my
parents when I was a kid because it was somehow thought that my Epilepsy was
in some sort of "remission"

That turned out to be a fantasy.

As a result, I had a seizure one evening some SEVERAL YEARS LATER.  No one
at the time could figure out why I had one till the docs found out about my
Epilepsy.

Fortunately I was at home helping out in the kitchen putting away groceries
which my mom had bought at the store.  I could've been anywhere when it hit.
This was almost 25 years ago (I'm 40 years old now).  But don't EVER think
it can't happen to YOUR son.

I know you're not fond of medications, but trust me when I say this, having
them WILL save you a lot of misery and potentially save your son's life.

Again, I ought to know as I am a voice of personal experience - AS THE
PATIENT.

Hope this helps :D

Cheers :D

Pat Cook
Denver, Colorado

He's had MRI's that

********************************
 I'm considering leaving him on the medication just

 I'll add my 2 cent's worth too. If he were on a Pacemaker would you
shut it off because *you're not Fond of it? That's what anti ep drugs
(AEDs) are for us. They stabalize the epileptiform waves and normalize
our lives. Whether an MRI shows damage doesn't matter as the EEG (you
said, at above **s, Parag. 1 ) shows Waves still there and the pills
apparently are controlling them.
  (I'm not a Doctor, but don't understand why the Dr. would consider
removing pills when the EEG still ***shows waves there, whether he's
had szrs. in 2 years or not. Usually? pills get removed (I thought) if
the EEG and MRI are *both clean-- his aren't yet?   And a szr. in
water can be more dangerous if someone doesn't see him have the onset
symptoms.)

 As Mr. Laurie suggested, your beliefs/ concerns really don't enter
into it? Prompt withdrawal of some AEDs without a Dr. supervising it
can produce worse side effects than toughing out 'our feelings about
pills'.  I also don't understand why the EEG shows waves but the Dr.
(too) said they'd remove the pills after summer, when he's back among
his peers in school.
   Heck I'd want to have a szr. among my peers in school.  Probably
in Gym or an assembly where there's a Crowd around....  :-<     I had
something like that (but not seizures) in Grade 2, and remember it
today, when I'm old, like it was yesterday...
   G./

  My earlier post might have sounded a little confused, as I did it
among several others on other threads, and to other people.
  A few people who were around here (and might still read the group a
few times a week), had *Childhood-onset type seizures and either grew
out of it, or were able to adjust pills (downward) as they matured.
  Depending on the szr. type (and the Dr. might be able to tell you
the probability), he might be able to outgrow both the szrs. and the
need for any pills later.
  For *now,  the EEG shows Epileptiform type szr. waves during his
Sleep deprived EEG ? even while he's taking the pills. So the Waves
(seizure activity)  are still going on there,  but the *pills are
keeping it from getting out of control and potentially posing problems
with seizures happening  while he's in gym, on a bike, swimming,
outdoors, etc.

  Did the Dr. ever suggest what might have started the szrs. off?
Many of us either have some type of damage that shows up on an MRI,
*or can relate to e.g. encephalitis (mine), meningitis? (not sure) or
other illnesses that might mess up the wiring a bit.   It would be
based on stuff like that that the Dr. might be able to suggest if it's
something that can be outgrown as he matures, and also if (later)
they might try reduce any pills that he uses.
  If he (your *son)  wanted to try reduce the pills e.g. while school
is out later, the **Dr. could suggest what rate the dose could be
reduced, and you could try it.   This would help too if he could
remember if he ever got a feeling or dizzy sensation  (an aura)  with
the original times he first had seizures.   (At age 4 that might not
be something that would mean much to him, so it might be hard to
explain what some types of Auras might feel like.   Mine were a
swirling dizzy feeling, and a taste or sense of smell like Lemon. But
others here get an Eggy taste, foul aroma that's not there, and
*either feelings of Deja Vu or Jamais Vu (never seen)  <--  try
explain *That to someone who's so young !!  :-<

  If he doesn't mind taking the pills for now, and the EEGs still
show the Waves, it might still be best to keep taking them until 1-2
tests turn up that show less to *no epileptiform activity.  Then the
Dr. might consider slowly (each 3-4 weeks usually)  reducing parts of
the doses to see how he does.  So long as he's still got the EEG
waves, though, my (personal/ non-medical) feeling is that it might be
best to keep taking the pills, as they appear to give him control and
allow him to be a normal 4+ year old.   As a parent too, I'd be happy
to have someone who's controlled and able to interact and play without
having *me in his way, watching every move as he plays and matures.
   They *might have to change the dose (up for weight, metabolism, or
down if he outgrows them), but that's medical stuff that I'm not
qualified to reflect on.   The fact the Dr. is running EEGs each 6-12
months, I'd take as a sign you have a *good Dr.  who's watching how
things are doing, and looking for any changes that might indicate if
any doses could be reduced later.
   Keep us up to date too.   There are *lots of people who read this
group, even if they don't post, and they learn from our varied
experiences, depending on their needs and family members involved with
this.      I hope he has a good summertime.      G./

  My earlier post might have sounded a little confused, as I did it
among several others on other threads, and to other people.
  A few people who were around here (and might still read the group a
few times a week), had *Childhood-onset type seizures and either grew
out of it, or were able to adjust pills (downward) as they matured.
  Depending on the szr. type (and the Dr. might be able to tell you
the probability), he might be able to outgrow both the szrs. and the
need for any pills later.
  For *now,  the EEG shows Epileptiform type szr. waves during his
Sleep deprived EEG ? even while he's taking the pills. So the Waves
(seizure activity)  are still going on there,  but the *pills are
keeping it from getting out of control and potentially posing problems
with seizures happening  while he's in gym, on a bike, swimming,
outdoors, etc.

  Did the Dr. ever suggest what might have started the szrs. off?
Many of us either have some type of damage that shows up on an MRI,
*or can relate to e.g. encephalitis (mine), meningitis? (not sure) or
other illnesses that might mess up the wiring a bit.   It would be
based on stuff like that that the Dr. might be able to suggest if it's
something that can be outgrown as he matures, and also if (later)
they might try reduce any pills that he uses.
  If he (your *son)  wanted to try reduce the pills e.g. while school
is out later, the **Dr. could suggest what rate the dose could be
reduced, and you could try it.   This would help too if he could
remember if he ever got a feeling or dizzy sensation  (an aura)  with
the original times he first had seizures.   (At age 4 that might not
be something that would mean much to him, so it might be hard to
explain what some types of Auras might feel like.   Mine were a
swirling dizzy feeling, and a taste or sense of smell like Lemon. But
others here get an Eggy taste, foul aroma that's not there, and
*either feelings of Deja Vu or Jamais Vu (never seen)  <--  try
explain *That to someone who's so young !!  :-<

  If he doesn't mind taking the pills for now, and the EEGs still
show the Waves, it might still be best to keep taking them until 1-2
tests turn up that show less to *no epileptiform activity.  Then the
Dr. might consider slowly (each 3-4 weeks usually)  reducing parts of
the doses to see how he does.  So long as he's still got the EEG
waves, though, my (personal/ non-medical) feeling is that it might be
best to keep taking the pills, as they appear to give him control and
allow him to be a normal 4+ year old.   As a parent too, I'd be happy
to have someone who's controlled and able to interact and play without
having *me in his way, watching every move as he plays and matures.
   They *might have to change the dose (up for weight, metabolism, or
down if he outgrows them), but that's medical stuff that I'm not
qualified to reflect on.   The fact the Dr. is running EEGs each 6-12
months, I'd take as a sign you have a *good Dr.  who's watching how
things are doing, and looking for any changes that might indicate if
any doses could be reduced later.
   Keep us up to date too.   There are *lots of people who read this
group, even if they don't post, and they learn from our varied
experiences, depending on their needs and family members involved with
this.      I hope he has a good summertime.      G./

  My earlier post might have sounded a little confused, as I did it
among several others on other threads, and to other people.
  A few people who were around here (and might still read the group a
few times a week), had *Childhood-onset type seizures and either grew
out of it, or were able to adjust pills (downward) as they matured.
  Depending on the szr. type (and the Dr. might be able to tell you
the probability), he might be able to outgrow both the szrs. and the
need for any pills later.
  For *now,  the EEG shows Epileptiform type szr. waves during his
Sleep deprived EEG ? even while he's taking the pills. So the Waves
(seizure activity)  are still going on there,  but the *pills are
keeping it from getting out of control and potentially posing problems
with seizures happening  while he's in gym, on a bike, swimming,
outdoors, etc.

  Did the Dr. ever suggest what might have started the szrs. off?
Many of us either have some type of damage that shows up on an MRI,
*or can relate to e.g. encephalitis (mine), meningitis? (not sure) or
other illnesses that might mess up the wiring a bit.   It would be
based on stuff like that that the Dr. might be able to suggest if it's
something that can be outgrown as he matures, and also if (later)
they might try reduce any pills that he uses.
  If he (your *son)  wanted to try reduce the pills e.g. while school
is out later, the **Dr. could suggest what rate the dose could be
reduced, and you could try it.   This would help too if he could
remember if he ever got a feeling or dizzy sensation  (an aura)  with
the original times he first had seizures.   (At age 4 that might not
be something that would mean much to him, so it might be hard to
explain what some types of Auras might feel like.   Mine were a
swirling dizzy feeling, and a taste or sense of smell like Lemon. But
others here get an Eggy taste, foul aroma that's not there, and
*either feelings of Deja Vu or Jamais Vu (never seen)  <--  try
explain *That to someone who's so young !!  :-<

  If he doesn't mind taking the pills for now, and the EEGs still
show the Waves, it might still be best to keep taking them until 1-2
tests turn up that show less to *no epileptiform activity.  Then the
Dr. might consider slowly (each 3-4 weeks usually)  reducing parts of
the doses to see how he does.  So long as he's still got the EEG
waves, though, my (personal/ non-medical) feeling is that it might be
best to keep taking the pills, as they appear to give him control and
allow him to be a normal 4+ year old.   As a parent too, I'd be happy
to have someone who's controlled and able to interact and play without
having *me in his way, watching every move as he plays and matures.
   They *might have to change the dose (up for weight, metabolism, or
down if he outgrows them), but that's medical stuff that I'm not
qualified to reflect on.   The fact the Dr. is running EEGs each 6-12
months, I'd take as a sign you have a *good Dr.  who's watching how
things are doing, and looking for any changes that might indicate if
any doses could be reduced later.
   Keep us up to date too.   There are *lots of people who read this
group, even if they don't post, and they learn from our varied
experiences, depending on their needs and family members involved with
this.      I hope he has a good summertime.      G./

I don't actually have any children, but I was a child with epilepsy like
some of the others on the newsgroup. I began bumping into walls and
lamposts, and doing all kinds of stupid things from the age of 9 years old,
but I didn't have my first grand-mal seizure until I was 11 in the school
playground where I bumped my head badly and was taken to the hospital with
my mother who was undoubtedly very worried at what had happened - like you
a bit!

Since then my paediatrician and neurologist have  put me on combined
mixtures of nearly every anti-epileptic medication under the sun, but I
still have yet another seizure after another, and somehow I know despite my
taking them regularly both night and day that it's going to be with me
forever!

No medication actually prevents a seizure, as as they are incurable and
unpreventable! The drug is only there to help control the seizure the best
it can, so if I were you, I'd just live every day to the fullest and hope
for the best, I'm 41 now.

Because mine are so frequent, my hubby has to look out for me and catch me
to make sure I don't land on hard surfaces and end up with half my face
bruised up, which you could try with your son if it gets any worse!

Sofie