Peace Kid's Fishing Derby

For info. about PEACE please visit

http://peaceinark.com/events.html

DEFINITION OF EPILEPSY..

According to the Epilepsy

Foundation of America,

epilepsy is a physical

condition that occurs when

there is a sudden, brief

change in how the brain

works. When brain cells are

not working properly, a

person's consciousness,

movement, or actions may be

altered for a short time.

These physical changes are

called epileptic seizures.

Epilepsy is therefore

sometimes called a seizure

disorder. Epilepsy affects

people in all nations and of

all races.

Arkansas Fishing

RECORDS

PEACE FISHING VIDEO

Meet Lisa Cruse, she is hooked on fishing and here

to help you catch the truth about epilepsy.

Lisa says that people are

very understanding of

seizures if you explain

things to them. She is

with us today to help

share her story in her

own words…

I started having seizures

about 10 years ago and

did not have any idea

what they were. I would

have one and then it

would be months before I

had another one. As time

wore on, they would get

closer and closer

together. And then I

started getting clusters of

them. I really thought I was going crazy and was scared to

talk to anyone about them. I did talk to one really close

friend about them when they started and she was the one

that helped me early on and through all the drama of

diagnosis. I have been through tilt tests, portable heart and

brain monitors, psychologists, and doctors that wanted

quick diagnosis and resolution. One particular doctor came

highly recommended. But I found out that he only took

cases that were consistently registering on an EEG. Mine

did not. I finally ended up with a doctor that really has

worked with me and has helped me tremendously towards

getting these under control. When the seizures first started

I was a seasoned open water diver. I went every chance I

got. I have had to eliminate that hobby and realize that I

will never be able to do that again. But with that said, I

have taken up new hobbies like fishing. I have continued

my other hobbies like cycling and hiking. A couple of years

ago I rode in a 50 mile benefit ride and completed it. I work

for the same organization that I had since the seizures

started. Luckily this organization is very understanding and

helpful. My darkest days were a couple of years ago when

I was having them in clusters of 10 – 12 a day for a couple

of weeks in a row. Then I would get a break and then we

would start over. I really wanted to die then. I saw no relief

at that time. The medications I was on was not helping..

Now that things have turned around, I take each day one at

a time and enjoy the little things in life. The viewpoint on

life has changed and I see things in people and events

around me probably differently than other people do. I live

to participate in life and hopefully have some kind of impact

on others.

Logan's Story...

It all started one morning at home right after our youngest son turned one. It

was the end of March but still cool enough that our little one had his yellow

footed sleeper on to keep warm. He wasn’t feeling well, almost as if he was

catching a cold. I had taken his

temperature and it was normal. Lying

beside him in our bed that morning

around 9:00 am he wiggled and began

to cry out and suddenly without warning

our little baby began to have his first

grand mal seizure. Not ever having

seen one I of course did not handle it

well. I began screaming and picked him

up and ran to the living room and placed

him on the carpet. The shaking turned

to gasping as I watched his face turn

white, blue, purple, and then a horrible

ashen gray. Then there was silence and

he was still. He was not breathing. I

waiting for what seemed an eternity for

him to take a breath but nothing

happened. I felt his life slipping away

right before my eyes. Finally I did what I

had seen others do on TV and I closed

his nose and tilted his little head back

and breathed for him. Three times and

then to my surprise as I thought all hope was gone, he took a shallow breath,

then another, then a deep breath, then he began to cry. By the time the

ambulance arrived our house, little Logan was crying well and a pale white

color. At the ER it was explained that our son had what is known as a febrile

seizure. I was not convinced. The ER doctor said he was running a fever

when he arrived and had a viral infection. The doctor told us we would get use

to it and that Logan did not need me to breath for him that it was normal and

he would always breathe through the seizure. As a parent I can assure you,

seeing my child have a seizure is not something I will ever get used to.

That was the beginning. We decided to take our little Logan to Arkansas

Children’s Hospital to find out more. Logan was appointed a wonderful

Neurologist and he began testing Logan. Although the seizures became more

frequent they never lasted more than 3 minutes. After the MRI, EEGs, Sleep

Study, etc. it was determined that our child has Benign Rolandic Epilepsy

(BRE).

Most children with BRE do not need medication. However, Logan’s seizures

become more frequent. He became very angry and violent, hitting and being

mean. He was like a light switch that you never knew when it would go on or

off. Christmas Day 2005 we found ourselves with Logan spending a few days

at ACH where a new doctor put him on a new medication. After being home

just two days our son had an episode and we had to call an ambulance once

again. Frustration was my life at that point.

In January 2006 Logan’s regular Neurologist put him on yet a new medication.

For our son this was like the sun coming out after a terrible storm. His attitude

and behavior improved. He became our sweet little child again. His seizures

were controlled for nine months. October 2006 our little Logan began having

seizures at preschool during nap time. He had a seizure every day for three

days. I took him to his PCP and his Neurologist. Blood work was done and it

seems he was metabolizing his meds quickly. The Neurologist increased his

mediation level.

As of January 2007 our little Logan is on Carbatrol and Topamax for his

seizures. Every time he hits a growth spurt we have to increase his meds.

Also, sleep does not come easy at our home. Every time our son rolls over or

takes a deep breath or cries out in his sleep I wonder, is it a seizure coming

on?

I have given my son a nickname of Logan the Lion heart. He loves animals

and likes to growl like a lion or bear. He even dressed up like a lion for

Halloween one year. It takes a lot of courage for a child to grow up with

seizures no matter what age they are when the seizures start.

Benign Rolandic Epilepsy is one of the types that children will outgrow

according to the doctors. Logan will outgrow this when he goes through

puberty. Also, it does not do any permanent damage to his brain, so they say.

This is good news and keeps us going from day to day.

As of 2009 our little Logan Lion heart is going into second grade and is on

target in every aspect including social. However, there are times especially

when he catches a cold that we continue to have small seizure activity.

Sometimes we miss a few days of school. For the most part, however, he is a

happy child doing normal things. He loves fishing, his computer hunting

games, and playing X Box with his Dad.

While going through this situation with our son we reached out to people with

children who have epilepsy and other seizure disorders. What we found was

that there had never been a parent support group started for parents of

children with epilepsy. One day as I thought about how much peace I felt while

Logan’s seizures were under control it dawned on me that other parents need

to feel peace as well. Thus, P E A C E was started.

It is my sincerely belief that as we come together and learn and support one

another we can overcome the stigma attached to epilepsy and train others so

that children, parents, and families can find peace in their daily lives.

Please join me in this effort and let’s bring peace to our communities!

-Tina L. Alexander, Logan's Mom and Founder of PEACE-

Ethan's Story...

“My name is Mandy Ochoa. I am the proud mom of Ethan

Smith. On February 4th, 2006, we almost lost Ethan at age 7

months. We found him not breathing in his crib. He was

lifeless and blue all over. I lost all sense of reality in that one

moment.

However,

God gave

me enough

courage to

call 911

and guided

me outside

of my

home. I

didn't know

why I was

to lay my

son down

on the floor

and go

outside.

But once I

opened my

door I

knew why.

A police

officer was driving down the road. I flagged him down and

told him my son was not breathing. He immediately entered

my house and proceeded to perform CPR. That police officer

saved his life until paramedics could come and they took

over his breathing. God had sent me an angel that day.

Once we were sent to Arkansas Children's Hospital it again

was like being in a whirlwind, several people rushing around

hovering over my little baby in the emergency room, yelling

out orders and directions, hooking him up to machines,

injecting him with God knows what medicine, inserting a

tube into his lungs, strangers asking me millions of

questions, but nobody answered mine. Why is this

happening to my son? What is going on? What happened?

Is he breathing? Is he going to be OK? Someone please

answer me!

Finally, there was silence, the bustling around of strangers

stopped and everyone is around his bed blocking my view.

Then suddenly there is applause! He has a breathing tube.

He is breathing! Not on his own but he has breath. They tell

me he is stable, that they are transporting us to the pediatric

intensive care unit. I can finally take a breath of my own.

For the next two days there are many tests being performed

and many doctors checking on my son, many questions

being asked, again no answers. They decide that they will

take the breathing tube out and see if he can breathe on his

own. It's a miracle! Prayer does work! God does listen! He is

breathing on his own.

Finally, I get to hold my son and rock him. This is when I find

out something is still not right. As he lays his sweet head

across my chest I feel him tighten against me. I hold him out

in front of me and his eyes start to roll back, his arms stiffen

straight up in the air and his breathing is labored. As fast as

it started it ended. What was this? What was going on? I

speak to him. I call his name and he is not responding to me.

I call for the nurse and tell her my son is acting funny. I don't

know how to describe it. She looks at him and of course by

then he is looking around as if nothing has happened. She

tells me that she does not know but of course if it happens

again to call her. This does on for two days before a nurse is

able to see it for herself. She says that he is having a

seizure and she is calling neurology. A what? A seizure?

Why didn't I know he was having a seizure.

Again, a whirlwind. More doctors, more tests, more

questions. No answers! Finally, I am told after an EEG is

performed that my son has epilepsy. To be more specific, he

has Complex Partial Seizures. Epilepsy? I didn't see my

son's whole body shake and jerk? How can he have

epilepsy? There is no on in the family that has epilepsy. I

was just as uneducated as many people are about the

condition.

But finally some answers! At least I can put a name to what

happened that day and what his little body is going through.

He is put on medication and told that we can go home once

his seizures seem controlled through medication. Ah, home!

Yes, I want to go home. But I was frightened! Home alone? I

think to myself and wonder if I can talk Dr. Sharp into coming

home with us so that I can sleep at night. I am sure every

parent would like it if he would come live with them, but I

think his family would miss him.

I just feel that I would feel safer if someone trained in

epilepsy was at my home 24 hours a day. Who am I to

handle such a situation? I am not trained and educated in

this condition! I have no idea what to do. What if I am home

alone with him and he has a seizure? Even though the

hospital explains numerous times the first aid procedures

regarding what to do when someone is having a seizure they

cannot give you the courage and faith that you need at that

moment to handle the situation. However, I have learned

that it comes with time. It comes from the support of other

parents that are in the same situation as you are. You find

out that you are not alone. You are not the only person going

through this. And most of all, your child is not the only child

going through this.

Although you may not ever find our why your child has

epilepsy or a seizure disorder I have faith that if all parents

fight hard for their children we one day can find out those

answers. And even better, find a cure!

I hope by creating this support group for parents we can give

support and guidance to other parents who are scared and

feel alone. I hope as parents we can educate people on

epilepsy and seizure disorders and tell them that our

children are normal happy healthy children just like theirs.

They don't need to be scared of our children. They don't

need to treat them differently. They too just need a little more

support and understanding that they have a condition that

they can't control. Epilepsy is not WHO they are, it is WHAT

they have.

Don't let epilepsy control your life, control epilepsy.”

-Mandy Crow-Ochoa , Co Founder and Vice President of

PEACE

Leah's Story...

Epilepsy can strike at any time in a person’s life…for me that time

was age 4.

Hello, My name is Leah Pursell, I was born in 1983 and have been

living with epilepsy all of my life.

When I was 4, my parents started noticing me staring off into

space…like I was daydreaming. I would be talking or eating, then all

of the sudden I would stop in the middle of whatever I was doing for

a few seconds then pick right back up where I left off. They soon

realized that this wasn’t

normal. So, they took

me to see my

pediatrician…who

referred me to a

neurologist. The

neurologist ran a series

of tests and determined I

was having petit mal

seizures (non-convulsive

seizures) or “spells”. I

was put on medicine to

somewhat” control the

spells.

When I was 12, I had my

1st, but not last Grand

mal seizure (the kind

where you convulse).

After that, I went to the

doctor and they did more tests and I was put on a medicine that kept

them under control!!! Of course…that is…if I took my medicine

right!!! In high school it was really hard…because all I wanted to do

was be a part of everything that was going on. I wanted to hang out

with my friends and stay up late…you know the usual high school

stuff.

I was and still am a VERY stubborn person. I don’t like having to

depend on anything or anyone. I especially didn’t like having a

“disorder” that prevented me from doing the stuff that I enjoy…so I

would skip my medicine because I didn’t want to be dependent on it

and I wouldn’t listen to doctors or my parents. I had several

seizures throughout high school. When I went to college, I realized

a little more about how important taking my medicine and getting

enough sleep was. I made it through college with just a few

seizures!!! YAY!!! When I was a senior in college I thought it would

be a “good idea” to switch my medicine. Boy was I wrong!!! I

wanted a safer medicine so I could have children. I went through

several medicines, but none worked as well as the one I was taking.

I was allergic to one, another didn’t work, another worked a

little…then it happened. In December 2005, I had “status

epileptus”…a continuous series of seizures. And once again I was

back to square one. I had more tests run on me, and I got put back

on my original medication. I’m happy to be back on my original

medication. I finally feel safe again. And turns out this medicine is

fine to be on while having kids…it’s safer than being on a medicine

that doesn’t work.

Now I have finally reached a point in my life where I realize just how

important it is to do what is right for me!!! I still hang out with my

friends and stay up late, but I watch what I do. If I want to stay out

late, I have to know that I have a place to stay and get a good nights

rest and that I can sleep in the morning. I make sure I take my

medicine every day and I even take it at the same time everyday. I

listen to my doctors and even my parents “sometime”. I can still

have a fun and normal life…and so can you!!!

Growing up was fine, but I didn’t really have anyone that I could talk

to that would understand me….that is why I am so happy to have

found an organization like PEACE. Hopefully I can be THAT person

that kids can talk to about what they are dealing with. And maybe I

can help parents understand their children…since kids cannot really

express what is going on with them. I have always thought that if I

had an older person around that was going through what I was; I

would have listened to him. I probably would’ve taken my medicine

and been a little safer.

PEACE stands for Parents Educating Arkansas about Children with

Epilepsy. Our goal is to educate all Arkansans about this disorder

which affects around 2.7 million people nationwide. We want people

to feel safe about this disorder and be able to understand what it is

and how to help deal with it. We hope to be a shoulder to lean on

for families. We want to be able to give proper information to

others…answer questions that some people may have but haven’t

been answered. But mainly:

We want to Educate Arkansas about Children with Epilepsy.

Thank you! Leah Pursell, PEACE Founding Member

For info. about PEACE please visit http://peaceinark.com/events.html

Arkansas Tournament Fishing supports the

PEACE Kid’s Fishing Derby! Please lend a

hand at next years event. Be a volunteer

and help keep fishing alive by giving your

time to these children with EPIEPSY.

Parents Educating Arkansas about Children with Epilepsy (PEACE) is a free support group for parents and a 501(c)(3) nonprofit organization.