Life took an unexpected turn after my son’s Lennox-Gastaut diagnosis
Jeff didn't start having seizures until he was almost 8 years old
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Things don’t always go how you expect them to.
My introduction to Lennox-Gastaut syndrome (LGS) sadly came through my son Jeff’s diagnosis at age 8 in November 1980. At the time, it was just referred to as uncontrollable seizures.
Jeff was born on Sept. 7, 1972, with no complications. He was an average little boy who bugged his sister and once put our kitten, Inky, in the toilet. Luckily, I was there to rescue her! He loved books, and Dr. Seuss was his favorite. At 3 years old, he had “Hop on Pop” memorized and would want to sit and read with whoever visited our house. He rode his Big Wheel and loved playing with his Matchbox cars.
One day, when Jeff was in second grade, he ran into the corner of the brick school building during recess. I was called at work to pick him up from school, as his right eye was already beginning to swell shut. I was very concerned about his sight, so I took him to an ophthalmologist to make sure he didn’t have permanent damage. The doctor said his eye was fine; it would just take some time for the swelling to go down. Never in my wildest dreams did I think he’d need to go to the emergency room for further testing.
Jeff’s health takes a turn
In hindsight, some of Jeff’s neurologists suggested that he was possibly having an absence seizure when he hit the building. There was no way to know for sure. The school nurse said Jeff didn’t lose consciousness, and later, when I asked Jeff what happened that day, he just shrugged it off and said, “I was chasing a girl and hit the wall.” That’s what he remembered.
Jeff was almost 8 when I first noticed him staring into space or making grunting noises, which I attributed to him playing with his cars and making car noises. That summer, before he started third grade, he and his sister went to vacation Bible school. My daughter came home one day and said the people told her Jeff was making noises and not listening to them. I asked Jeff about this, and he said, “I didn’t, Mom.” He had no memory of it at all.
Third grade was when Jeff’s seizures became more pronounced. He would bring home perfect papers one day, and the next, they were all scribbled. Once again, I asked Jeff what was going on, and he said he didn’t know. By then, his teachers and principal were calling to tell me I needed to correct my son’s behavior. I was separated from my husband at the time, so they thought he might be acting out. There were times when Jeff would inexplicably take off his shoes and walk out of the classroom.
One day, I was talking to my boss, a doctor, and I told him I thought Jeff was having seizures. He quickly got in touch with a neurologist friend, and Jeff underwent testing that confirmed he had epilepsy. This was the beginning of 40-plus years of doctors, medications, and testing.
I remember friends and family asking me if I was worried about Jeff’s future, but honestly, I wasn’t. I knew a little about epilepsy, and I just thought he would be placed on medication and be fine. I never dreamed his rare seizure disorder would pose a lifetime of hurdles for both Jeff and me as his advocate and caregiver. LGS was a whole new world we needed to navigate.
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
