Mary’s Epilepsy Story

August 12, 2016

My name is Mary. I am a wife, and mother of three teenage boys Sam (18), Ben (16) and Joey (14). Our epilepsy story began 7 years ago when my oldest son, Sam, was 11. We noticed that he was having “spells” where he would just stop everything he was doing and stare off into space. These would last anywhere from 4 to 10 seconds and happen frequently throughout the day. We were concerned and took him to see our family doctor at the time and were told it was nothing, just daydreaming. He’d grow out of it – not to worry. This went on for over 5 years – the spells becoming more and more frequent. It was affecting his school work, his social life, and our life. Finally when he turned 16 and went for his G1 I put my foot down and demanded testing. I knew something was wrong. My son had his first EEG – which came back normal. I told the Doctor: “That’s not good enough, he is still having these zone outs and I want further testing done and a referral to a neurologist.” We waited a very ,very long time to get into see a neurologist. I finally had to tell our doctor that I didn’t want to wait for CHEO and that we would see an adult neurologist. Once we were in, the ball started rolling very quickly. Sam had his second EEG (sleep deprived) on November 7, 2012. On November 12 Sam was given the diagnosis of Juvenile myoclonic epilepsy – E1 Generalized. The G1 went into the drawer and we had one devastated and angry young man. Sam still does not drive, but he is going to college and loving every minute of it. He takes medication daily (Zarontin and Lamotrigine) but we still haven’t been able to find that magical combination to get him seizure free. We’re persisting and now have a wonderful new neurologist that we’re working with to get him there.

But my story doesn’t end there…At the beginning of last summer, I noticed our youngest son, Joey, was having moments when he would just not “be there”, then snap back into the present and not know what had just happened. “Here we go again” was the thought that popped into my mind. Actually it was more like “OH NO – NOT AGAIN!” I told my husband that I suspected Joey was having seizures as well. We didn’t want to believe it. It just couldn’t be happening again. So back to the doctor we went. Because of what I went through with Sam, I was very insistent that we be referred immediately. Joey had his sleep deprived EEG at the end of July. We asked ourselves what were the chances of two out of three kids having epilepsy? In August of 2013 Joey was diagnosed with Juvenile Absence Epilepsy. On one hand we really couldn’t believe it, on the other hand, it was expected news. I still sometimes wonder what happened along the way, in the developing stages of their lives to cause it. We will never know. Joey is now taking medication (Zarontin) to control the seizures – but again, we are not quite at the seizure free place we are striving for. As for our middle son, Ben, he has watched his brothers struggling with medication side effects, and emotions that sometimes overwhelm them. He is incredibly supportive of them both.

Having said all that, all of our boys are happy, well rounded, successful students, living life to the fullest and not letting anything hold them back. The boys and my husband and I still have our moments when we are sad or angry and frustrated, but for the most part we’re dealing with it day by day, week by week, and month by month. The boys are handling their epilepsy with grace and dignity, and I say often, Sam and Joey have epilepsy, but epilepsy does not have them!!! I could not be more proud of all three of my children. They are all phenomenal people.