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Medical Forum / Diseases and Disorders / Epilepsy / August 2005

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Daughter with seizures

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jkledbetter - 25 Aug 2005 02:50 GMT
I have a 5 yr old daughter with polymicrogyria in the frontal left lobe of
the brain and it causes "stroke-like" symptoms on her right side. She has
only had maybe 12 seizures in her life. Dr.'s told me when she was younger
that it was a possibility. She ONLY has seizures with sickness and fever.
She has been on trileptal in the past and she could not function. We
stopped that medicine and she went seizure free for 6 months and had her
next seizure with a fever. When I say, she could not function, I mean she
couldn't walk and was tripping and running into walls. When the right side
weakness and side effects of medicine, it was terrible. They now have her
on Depakote sprinkles twice a day. At first it was great and no real side
effects were noted. But as they medicine got into her systems, she began
having same side effects. Here's the question. Does anyone know of a
medicine that doesn't have any side effects or should she really be on
meds when she is having occasional seizure with illness? Any ideas would
be great. I just feel helpless. Kari
G.Ross - 25 Aug 2005 05:01 GMT
>I have a 5 yr old daughter with polymicrogyria in the frontal left lobe of
> the brain and it causes "stroke-like" symptoms on her right side. She has
[quoted text clipped - 11 lines]
> meds when she is having occasional seizure with illness? Any ideas would
> be great. I just feel helpless. Kari

 We had some others around who had more seizures when they had colds--  
perhaps some will post in next few days if they see your message.  They
probably want to try find some type of control so she'll be able to
concentrate, and remember things (if there's any memory effects) as she gets
older.
  I had also read (here) that some children have stronger negative effects
as they reach puberty, with some of the szr. types, so perhaps the Dr. is
trying to get her at a reliable level before she reaches that age.  Some of
the people posting then had used older meds. since some of them had longer
to have any potential side effects determined for patients involved.   In
more difficult to control szr. types they might have decided to try some of
the newer, more targeted types of meds., since if they can control her
seizures with one of those, the degree of control and reduced possible side
effects might make it better for her to function at school and as she
matures.
  There's a Medications link under the U.S. Ep. Foundation site at
http://efa.org   , if your Pharmacy didn't give you a printout about her
current meds. and what to avoid with them, if anything  ( they should have).
 *If she has more fevers or colds, and you need over the counter products
for her, ask the Doctor what she can use, or ask the Pharmacist where you
get her Prescriptions filled, which ones will work without compromising her
Anti-Seizure Meds. Some of the cold medicines may contain alcohol or other
carriers that might compromise the antiseizure pills, so the Pharmacist
should know which ones are safe to use with her current Meds. and condition.
G./
Sofia - 26 Aug 2005 21:50 GMT
>    I had also read (here) that some children have stronger negative effects
> as they reach puberty, with some of the szr. types, so perhaps the Dr. is
> trying to get her at a reliable level before she reaches that age.

Yeah, I agree completely, as mine seem to multiply during my period! I
have to get hubby to pay extra special attention at these times, but I
doubt if there's any kind of drug to stop my seizures increasing like
this, and I doubt there will ever be a wonder drug to stop your 5 year old
getting seizures during illness either - sorry.

Sofie
Julie - 25 Aug 2005 05:05 GMT
Welcome to the ng, Kari.  I know it has to be so very difficult and
emotionally painful to be a parent with a child with any kind of illness or
disorder and you feel like you have no control to help them.  The doctor's
goal should be to help your daughter reach control of her seizures, in most
cases this means medication.  Sometimes it takes many trials before the right
med or med combination is found that will work for your daughter.  We are all
different, so what works for me may not work for your daughter.

Many years ago I was having more than the usual amount of seizures (for me) so
I went to see the best neurologist in our community.  He put me through
another EEG and an MRI.  I found out what I already knew - that I have
epilepsy, with no explanation.  I didn't get frustrated with that answer.  At
least I knew that it wasn't caused by a tumor.

The doctor started me on a new drug.  After many months I had so many bad
symptoms that I felt like my life wasn't worth living.  When I went into the
doctor I remember him saying, yes, that's a side effect, yes that's another
side effect, and so on and so on.  So he slowly took me off that med and
slowly put me back on another med.  This new med immediately gave me a
terrible reaction.  I had to go to the emergency room to get a shot to stop
the nausea.  So the doctor decided to put me back on the old medication I was
originally on when I first came to see him and got it to a therapeutic level.
It is a very old drug, but it works for me.  In fact since I have found one of
the triggers to be MSG, I have done quite well.  I have gone for 10 years now
without a seizure.

I used to have seizures when I was sick, with the flu, etc.  So I stay in bed
and if I'm going to throw up I bring a bowl to bed with me.  Does your
daughter have a feeling before she has a seizure?  If so she can lay down
right away, even if that means laying on the floor.  That will protect her
from falling to the floor.

Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

> I have a 5 yr old daughter with polymicrogyria in the frontal left lobe of
> the brain and it causes "stroke-like" symptoms on her right side. She has
[quoted text clipped - 11 lines]
> meds when she is having occasional seizure with illness? Any ideas would
> be great. I just feel helpless. Kari

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