by Jonathan Smith | Dec 23, 2014 |
BROOKE Epilepsy MY NAME IS BROOKE. THIS IS MY STORY. Brooke is a smart and beautiful girl like her Mother and funny and witty like her Daddy. She loves to play and knows no strangers. She was at the top of her class in 1st grade and loved to go to school to learn and play with her friends. In May of 2013 I received a call from school that I needed to come and check on Brooke. They stated that she had a seizure, I remember getting a little mad and asking WHAT makes you think it was a seizure. They filled me in as I was already in route for the very fast 3 minute drive to school. She did in deed have a seizure and 2 more to follow over the next 2 weeks. We quickly searched the best doctors in GA in that time to take care of Brooke. They put her on the best FDA approved drug to address her epilepsy. Then we came to terms in May with the devastating news that our 6 year old had epilepsy and how tough that was going to be for us all, little did we know. She went the next 3 months seizure free. On September 12th 2013 we put her to bed as always. We went up an hour later to check on her to find her in a seizure, for how long we will never know. From that point on things were never the same. We quickly learned that there are many many forms of epilepsy and what we thought was devastating news of a generalized...
by Jonathan Smith | Dec 23, 2014 |
NOEL Epilepsy MY NAME IS NOEL. THIS IS MY STORY. When Noel came into the world on July 1, 2004, all was normal; all was perfect. Our second child, our first girl, came into the world three weeks earlier than expected, but that’s her personality — ALWAYS ahead of everyone. It falls into every part of her being, she’s even two years ahead in school. Fast forward almost eight years to the day, the day our lives were changed forever — July 27, 2012. What should have been a fun outing for the girls and I, turned into a trip to the ER via ambulance with many unanswered questions. Why did Noel seem so sleepy all day? Why was she much more quiet than normal? Why did her eyes roll back in her head as she slumped out of the chair while getting a manicure? I was assured all the way through that it was a simple case of syncope (fainting), but it just didn’t seem right. Why did she continue to seem out of sorts? So very, very tired. Why did this happen several times over a few days? By early August we had taken Noel to the neurologist and he began testing. Her EEG was inconclusive, but her MRI was perfect . All the while things were just not right with our Noel. We wondered why did she shake when she passed out? Why did she stare off into space? Why couldn’t we get her attention even when we were right in front of her? Now it’s the beginning of October and Noel has been admitted to...
by Jonathan Smith | Dec 20, 2014 |
EMILY Epilepsy MY NAME IS EMILY. THIS IS MY STORY. This is Emily King. She is 14 years old and likes doing many of the things that other teenagers enjoy. She loves to watch videos, ride her bike, ride roller coasters, go to the beach and eating junk food. She like many teenagers sleeps a lot, but this is not by choice, it is a side effect to her seizure medications. Emily has always been a joyful girl, full of life and energy – but the daily seizures that she has had since she was 10 months old continues to rob her each day. Emily’s seizures started off very slight, so much so that she wasn’t actually diagnosed with Epilepsy until she was 14 months old. Thus began our search for a way to stop her seizures. After five months on one medication and she just continued to worsen, we sought a second opinion and they changed the diagnoses to Infantile Spasms. We were very hopeful to see her seizures decrease while on a daily steroid injection, but toward the end of the three month treatment her seizures ramped back up again. So the merry-go-round of medications and medication combinations began. At the age of three we tried the Ketogenic diet, which left her in a lethargic state staring at the TV. We had a device called a VNS surgically implanted into her chest which sends electrical signals to her brain. In 2006 her seizures changed from generalized (which means that they spread too rapidly and a focal point can’t be detected) to clonic-tonic. This gave us hope that...
by Jonathan Smith | Dec 20, 2014 |
JACOB Cerebral Palsy MY NAME IS JACOB. THIS IS MY STORY. Jacob is our 11 year old son who was born 3 weeks early. Shortly after he was born, we noticed he’d have episodes of turning really red and blue in the face and his body would stiffen. The doctor and nurses took him into the NICU to be monitored for a while. At just a few hours old, we were told that he was having seizures. He then spent 10 days in the NICU before coming home on that Friday. We were to go to Egleston for a test that Monday. Little did we know that he’d have a 2 1/2 minute seizure in the elevator and end up being admitted to Egleston where we would be for the next 5 1/2 weeks. During the stay, we worked with to find a medicine to help “control” the seizures. He was placed on phenobarbital which helped for a while. As he’s gotten older, we’ve been through quite a few medications that would help for a little while before having to switch to something else. Currently, he’s maxed out on 3 different medications all while still having seizures daily. Through the past 11 years, we’ve had countless ER visits and hospital stays due to his seizures. We have spoken with Jacob’s neurologist, Dr. Holt, who has seen Jacob since being diagnosed with seizures. He truly believes that Jacob could benefit from medical marijuana. In hopes that we can get him off the phenobarbital, which is maxed out in the toxic range but is also the most helpful medication for Jacob to control...
by Jonathan Smith | Dec 19, 2014 |
PRESTON Lennox Gastaut Syndrome MY NAME IS PRESTON. THIS IS MY STORY. Hi, my name is Preston Weaver. I am 7 years old, and have Lennox Gastaut Syndrome. I started having seizures at about 5 months old, and despite numerous anti-epileptic medications, I have had seizures every single day of my life since. Currently I have about 60-80 a day. We have tried about 10-12 different medications, some have helped but we have yet to gain full seizure control. The seizures that I have cause regression and thus I am basically a 2 month old in a 7 year olds body, unable to walk, talk, or even hold my head up. Although there is so much I can’t do, there is also so much I CAN do! I can light up a room with my smile!! And I can turn any bad day into a great one with my sweet personality! I deserve a chance to do things I have never been able to do before. If we can stop the seizures, the possibilities are endless!!! READ MORE STORIES Want to become a part of the movement? Get...
