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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> >
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