This post is long overdue. I stated writing about Epilepsy in general in March 2008 and said I was going to write and post re my personal experience (this post). However if any of you read that you prob wondered if i'd forgot as nothing appeared. No, I didn't forget. I sent questions to various people and was unable to complete this until I heard back. So better late than never...here it is....
So when did my experience with epilepsy start? I was 9 months old when I had my first "seizure". According to my mother, it was about time for me to wake from my nap. So, she peeked in to see if I was awake and I was having a convulsion. Apparently, I always liked to sleep on my tummy, with my knees pulled in under me which was good right know or I may have choked. However, my mother turned me onto my side until it stopped. She called the pediatrician as soon as possible......ended up waiting 3 to 4 weeks. This was the same dr who saw my bruises (I bruised easily and was just learning to pull myself up on the coffee table ect. and trying to climb on everything) and told my mother to stop beating me. Anyway, when she took me to see him he dismissed the convulsions as febrile seisures and told her I would"grow out of it" and my mother was being "too emotional"! I continued to have more convulsions whenever I had a fever or ear infection. Then I had a grand mal seizure while at the Calgary General Hospital and the staff called the pediatrician there, Dr. Fagan. He ordered brain scans and other tests and that's when I was diagnosed with epilepsy.
I asked my mother re her shock of having two children born with epilepsy - myself and my brother who is two years younger than myself. She was told the odds of me been diagnosed with epilepsy were small because it usually skips a generation. My mother had seizures and so did a cousin of hers. So when she was pregnant with my brother, she was told that another child with epilepsy was not likely at all. He had his first seizure when he was 18 months old. My mother's seizures occured mostly during times of high stress and consisted of "blank spells" like day-dreaming, sometimes followed by headaches since high school but it was never taken seriously. They were worst when she and my dad seperated and then again when she had the divorce hearing in court. She took Dilantin for a few years but was not on any medication when she was pregnant with either my brother or myself.
What kinds of seizures have I had? At first, when I was a baby, I'd have convulsions. Then when I was about 18months old, I started to have grand mal seizures where I would go rigid, my fists would clench so tight that one couldn't straighten my fingers, and I would stare straight ahead and utter a "blood-curdling" scream. These usually lasted about a minute. Then I would become real groggy for a while or else fall asleep for about 30 minutes. Surprisingly, both my family and I did well through all this. Both my brother and I seemed to have constant ear infections so spent alot of time in Emergency and even had a couple hospital stays. I had tubes put in my ears when I was 3 years old and that helped a bit. My parents just made sure that I never got over-tired, over-excited and made sure that my temperature stayed at a normal level...the thermometer was always handy in our house. For the most part, my mother described me as a bright, energetic toddler/child and devolped physically and mentally at a normal pace.
What medications have I been on and how did they affect me? Apparently I was started on Phenobarb around age 5. For most people Phenobarb is supposed to be a downer, but not with me. I became very hyper and "climbed the walls" needless to say when I had a seizure it was very active. Also while on the Phenobarb I'd become very tense and my muscles would tighten. My medication was changed to Dilantin around age 6 and that's what I've been on since (just differing doses.) Once I was taken off Phenobarb, I was not as hyper or climbing everywhere. My seizures then consisted mostly of a horrified look but I'd rarely fall down. However I was always a tomboy. I enjoyed beating my brother at arm wrestles and attempting to arm wrestle my dad. He equates my strength as partly due to to the muscle tightening experienced while on Phenobarb.
In what ways, if any, did my epilepsy affect my lifestyle? I asked this question to my father and his response was for the most part I led a very normal life and except for when I was HAVING a seizure, I was just like the next person. The main thing would probably just be my memory. After a seizure my short-term memory for immediate things would often be affected and I couldn't remember certain things. However, I had a good memry and was more than able to relearn what I'd forgotten. An example would be scripture memorization. I was able to memorize and remember large passages of scripture.
How did my epilepsy differ from my brother's? After a few years on Dilantin, Matt was switched to Tegrotol and his seizures are very controlled. As children, his seizures were more convulsions. I remained on Dilantin and my seizures were more muscle tightening and screaming. My brother hasn't had a seizure for over 15 years now. I haven't had one since I got pregnant with my last child almost 4 years ago. We found that whenever I got pregnant (hormone imbalance) I had a seizure, and if I get a high fever (more specifically the rate my temp rises) can cause a seizure.
I remained on my medication (just adjusted the dose as necessary) during each of my pregnancies. During each I took Folic Acid as well as other prenatal vitamens and all three of my children were born healthy and epilepsy-free. I'm praying that it is true what the drs told my mother way back when she was pregnant, "epilespy skips a generation" and my kids won't get it. My next concern would be what about my grandchildren? Will it just be a concern for Autumn as the only female or can males also donate the gene? This I don't know but should prob find out. and....ACK!!! - the thought of me being a grandmother, I know I'm getting older, but let's not rush it!...;)...
"The transmission risk is usually related to the mother with epilepsy (about 6 percent) and less with the father(2.4 percent). These statistics come from a study done in Rochester, Minn., in 1988. Unfortunately not much more is known at this time. Overall, transmission rates are low but the risk exists. In addition, the age of onset of epilepsy in the parent also plays a role. Cause of the epilepsy may also play a role" - http://www.epilepsyfoundation.org/living/women/wei/familyplanning.cfm