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hailey (age 4 w/ epilepsy)   Message List  
Reply | Forward Message #180 of 195 |
Re: [epilepsy-testimonials] hailey (age 4 w/ epilepsy)

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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Thu Feb 8, 2007 3:04 am

lshockey4
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Forward
Message #180 of 195 |
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... they ... was ... gluten, ... "head-drops" ... something ... just...
mirandag1981
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Feb 7, 2007
12:58 pm

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...
laura shockey
lshockey4
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Feb 8, 2007
3:04 am

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...
apinsley
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Feb 8, 2007
1:13 pm

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...
miranda goranflo
mirandag1981
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Feb 8, 2007
2:53 pm

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...
apinsley
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Feb 9, 2007
1:06 pm

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...
miranda goranflo
mirandag1981
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Feb 12, 2007
3:10 pm

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...
apinsley
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Feb 13, 2007
11:47 am

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...
miranda goranflo
mirandag1981
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Feb 14, 2007
3:03 pm

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...
apinsley
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Feb 15, 2007
11:29 am

Alison, I know now that the Topamax was controlling the seizures faily well (the complex partial anyway). It did not control, however, the head drops and drop...
miranda goranflo
mirandag1981
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Feb 18, 2007
2:00 am
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