Peace Kid's Fishing Derby

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

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 EPILEPSY. A R K A N S A S T O U R N A M E N T F I S H I N G . C O M A R K A N S A S T O U R N A M E N T F I S H I N G . C O M Parents Educating Arkansas about Children with Epilepsy (PEACE) is a free support group for parents and a 501(c)(3) nonprofit organization.