Miranda, I live in NY. If you say she's seeing an increase in
seizures since weaning her off the Topamax, than maybe that was one
of the drugs that was working. I know all about awful meds, I ran
the gammut, but not with the ones Hailey has been on. Mysoline,
Dilantin, Phenobarbitol and Tegritol were my drugs. The dilantin and
pheno had side effects for me that were pretty bad. The pheno made
my drowsy and the dilantin affected my gums. What herbs are you
using? I don't know too much about the alternative methods, other
than the use of the ketogenic diet. Alison

--- In epilepsy-testimonials@yahoogroups.com, miranda goranflo
<mirandag1981@...> wrote:
>
> Alison,
>
> I have a friend who works at the H.D. and I will ask her more
about services. What state do you live in? We are in KY. We just
started getting SSI for her a few months ago and she gets a lot of
therapy at a C.P. center. I'll have to check more into it. Hailey is
currently on Klonopin (less that 1/2 mg.) and Zonegran (25 mg.). We
just finished weaning Topamax (she was on 150 mg.). She has been on
four others also. It's really tough weaning the meds and now that
Topamax is completely gone we are seeing an increase in seizures, so
we are trying to give her more of the herbs. The meds are awful and
it is a very last resort to go back up on anything. I just hope she
continues to improve as some of the drugs get out of her system.
Anyway, I'll let you know what I find out about the H.D. Thanks for
the info.
>
>
Miranda
>
> apinsley <a.pinsley@...> wrote: Hi
Miranda, What medications is she on? I'm glad to hear that what
> you are doing is working and her seizures are slowly dropping in
> daily number. What kind of services does your local health
> department offer for children with disabilities? Many have good
> programs available. Look into it and see what they offer. I work
> for the county health department where I live, and I know the
types
> of services they offer for children with disabilities is very vast
> and many people avail themselves of them. As I told you, I grew
up
> in an era where there was less known about epilepsy than there is
> now, and I'm still surprised with all this technology and
> advancements today in the field, that they don't know how best to
> help Hailey. Let me know what you find out about the local health
> department services. Alison
> --- In epilepsy-testimonials@yahoogroups.com, miranda goranflo
> <mirandag1981@> wrote:
> >
> > Alison,
> >
> > Sorry for the late reply. Thank you for thinking of us. My
> daughter's name is Hailey. I have seen the Epilepsy foundation
> website, but I have noticed they tend to favor drugs and surgery,
> like the doctors. This may be fine for some people, but I feel
that
> we need a different approach for Hailey. We live in Louisville,
Ky.
> We go to Cincinnati for treatment though. Much better doctors
there
> (though still not much help). We have had several opinions on
Hailey
> and I don't like any of them. They always tell me to expect for
her
> to get worse and expect some form of mental retardation. I won't.
I'm
> going to find something that works for her and prove them all
wrong.
> She is already doing much better from weaning the meds and the
vit.
> supp., elimination diet and herbs. Down from hundreds of "head-
drops"
> and "drop-attacks" to 10-20 (if any). I just pray she continues to
> improve and be able to recover. I hope you too continue to be
well.
> Thanks.
> >
>
>
> Miranda
> >
> > apinsley <a.pinsley@> wrote: Hi
> Miranda, I didn't realize the severity of the type of epilepsy
> > your daugther has. By the way, what is her name, I would like
to
> > address her properly within my responses, it would also help
with
> > the prayer request. It's hard to decipher a real cure given
the
> > fact that her entire brain seizes. Have you been in touch with
> the
> > Epilepsy Foundation in your state? If not, you might want to
> > contact them for other information and such. I wasn't
medicated
> > until I was 8, not having been diagnosed before then, so I
> developed
> > fairly normally, despite that. When you son is older, he will
> > understand her problem much easier. He is only one and doesn't
> > understand why his sister is having problems. I had two
younger
> > brothers, who, I am sure often wondered why I acted the way I
did
> > when I had seizures and probably stayed away from me too
because
> of
> > them. I can't believe that here we are in the year 2007, and
they
> > still do not have the answers we seek. Where do you live and
> where
> > have you had her evaluated and tested? Seek a second and even
a
> > third opinion on her diagnosis if you need to. Good luck
> >
> > Alison
> >
> > --- In epilepsy-testimonials@yahoogroups.com, miranda goranflo
> > <mirandag1981@> wrote:
> > >
> > > Alison and Laura,
> > >
> > > Wow, both of your stories sound amazing... and scarey. I
am
> > happy that worked for you and you and I know it does for some,
but
> > my daughter is 4. I just can't imagine putting her through that
> when
> > I still have so many other (less invasive) options. She really
is
> > getting so much better w/ the herbs, supp., and diet. I see her
> > making a full recovery. Hailey was diagnosed w/ complex partial
w/
> > secondary generalazation at age 2 w/ no known cause. They just
> > recently changed her diagnosis to generalizied onset epliepsy.
Her
> > whole brain seizes so they would not be able to just remove a
> peice.
> > They want to do a corpus collostomy. Where disconnect the two
> brain
> > halves. Very scarey. They have also been pushing vns on us for
> quite
> > some time. I don't want seizure reduction... I am after a cure.
> She
> > can't live like this for the rest of her life. I really feel
this
> is
> > it for her. I don't know if the meds did the same things to you
> two,
> > but they have reduced my daughter to infancy. I
> > > have had to stand by helplessly and watch my 1 y/o son pass
her
> > up. The meds are awful! I will update you w/ our story as she
> > progresses. Please keep us in your prayers, as we will you.
Thank
> > you so much for sharing your stories, I just can't imagine
doing
> > that to her. Maybe if it were myself, but not to my 4 y/o. I
can't
> > say never, but that is way down the road for us.
> > >
> >
>
>
> > Miranda
> > >
> > > apinsley <a.pinsley@> wrote:
> > 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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