Hi Miranda, I know it can be confusing when you don't understand
what is happening with your daughter. Have they determined where
the focal point for the seizures are coming from yet? I was 14
months old when I high fever caused a grand-mal seizure. After that
I developed Temporal Lobe Seizures, though nobody understood my
parents in the 1960's that there was something wrong with me. I was
8 before I was diagnosed and put on medication. At least today they
put somebody on medication right away in an attempt to get a handle
on it early. If she is a good candidate for surgery than go ahead
with it. Children's brains often are not as affected by brain
surgery as adults, because they are still growing, and other parts
of the brain will take over the part that is removed or missing.
Good luck and you and your family are in my prayers. Feel free to
email me privately at ajwp@....

Alison

--- In epilepsy-testimonials@yahoogroups.com, laura shockey
<lshockey4@...> wrote:
>
> Hey Miranda!
>
> My name is Laura and I'm 22 years old...soon to be 23. I had a
gran mal seizure when I was 22 months old. But the doctors never
figured out what was wrong with me and I never had anymore.
>
> I banged my head against a rock when I was 13 and my right eye
swelled up instantly. 6 months later after the injury I had a gran
mal seizure and was put on Dilantin right away.
>
> After that, I would have these little "episodes" where I would
space out, chew my tongue, sometimes groan, and have a major
headache and be tired afterwards. I was still on Dilantin but was
being treated for migraines.
>
> When I went away to college, the fall of my freshman year I went
to see a nuerologist in Pittsburgh, PA at Alleghany General Hospital
for a second opinion. Right away he told me that I was having
complex partial seizures just by listening to my story. That same
day he told me that I could continue to take other medicines to see
if they would work...but by that point I had already tried Dilantin
and was currently taking Topamax and Keppra. He also told me that I
could have a brain stimulator placed in me but that was more for
people who had gran mal seizures all the time. Then he also told me
about brain surgery...where they would actually remove the part of
the brain that was causing my seizures. Right away I wanted to have
surgery b/c I knew it was for me!
>
> After going through numerous tests to see if I could have
surgery, I took a semester off from college and had brain surgery.
They removed 2-2 1/2 inch part of my right temporal lobe and surgery
lasted 3 1/2 hours. I had surgery on Tuesday, August 31st, 2004 and
was discharged that Friday. It was amazing!!!
>
> All of my family and friends said the same thing that you said
about your daughter...that they just wanted the old Laura back.
Well I'm proud to say that I had surgery and it was a huge
success!!! I haven't had any seizures since I had surgery and the
doctor was slowly taking me off my meds. I took my last meds for
seizures on May 1, 2006. My final and last appt I had with my
doctor was October 2006!!
>
> Surgery for me was a great success and I'm glad I went through
with it. Ever since surgery, I don't have to worry about when I'll
have a seizure and try to remember that I must take my meds. I can
finally live a normal life!
>
> Now I don't know all the details about your daughter but I just
wanted to share with you my story and I hope it helps talking to
someone who has had seizures. If you have any questions feel free
to e-mail me.
>
> I hope all is well!
>
> Take care,
>
> Laura
>
> mirandag1981 <mirandag1981@...> wrote:
> > Hi. I am new to this site. I have joined other support
groups but
> they
> > do not have the same feelings as I do on alternative treatment.
It
> was
> > a ketogenic website group. No one had any idea what I was talking
> > about when I was explaining the herbs, supplements, and diet.
> > Hopefully I will be able to find more help here. First of all, my
> > daughter is 4 and was diagnosed with epilepsy nearly two years
ago.
> > She has progressively gotten worse due to all the meds (7). She
now has
> > hundreds of seizures a day, has lost the ability to walk, talk,
crawl
> > and even stand. We have recently been seeking forms of
alternative
> > treatment. She takes a number of different herbs including Black
> > Cohosh, Arnica, Brain and nerve coctail, virginia snake root and
> > several others. We have also been giving her supplements such as
> > B-Complex, Vit. E, Omega 3, calcium and several others. We are
> > currently testing her for food allergies by eliminating wheat,
> gluten,
> > lactose, sugar, soy and corn. She usually has hundreds of
> "head-drops"
> > a day, but she has improved over the last week. We have read a
lot of
> > good things about supplements like helping with seizure control
or
> > even eliminating them completely. We are looking in to every
> > possibility. The doctors have run out of drugs and are talking
brain
> > surgery with a prognosis of mental retardation. I have to do
> something
> > and find something that works for her. I would love to hear from
> > someone who has been through a similar situation. I could really
use
> > some support and advice. The doctors are 'bout useless at this
point.
> > I have had to do all my own research via books and the internet.
I
> > don't understand why these other less invasive options aren't
> > explained to us. Please help. We are in a desperate situation
and
> just
> > want our daughter back.
> > Miranda
>
>
>
>
>
>
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