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 in first 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.
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 P E A C E to our communities!”
-Tina L. Alexander, Logan’s Mom