The little man who changed my life was born 9 years ago now. He was born a healthy 8lbs and 12ozs. Everything seemed perfect, until it wasn’t. I know I told you a little about our story in my first blog post. In a series of upcoming blog posts, I’m going to go into more details. I’m hoping to engage readers, but if that doesn’t happen, at least I’ve documented more of the details for posterity. I’ve got a pretty good memory, but as the years go by, the details are starting to fade because there is simply too much to remember.
Owen had his first seizure at 4 months old. It was the day before Thanksgiving and we were getting ready for a big weekend, with family coming to town for Owen’s baptism. He had multiple seizures that day In a panic, I called his pediatrician who has the biggest heart ever. He saw us right away and tried to reassure me that it was probably nothing, but made an appointment for us to see a neurologist the day after the holiday.
Owen continued to have multiple seizures. We saw our first neurologist the day after Thanksgiving. She had him admitted to the hospital for tests. He was released the next evening with a prescription for his first anti-epileptic drug, phenobarbital. I was devastated that my baby had to be on medication. I was hopeful, however, that it would stop his seizures. It didn’t.
Owen continued to seize frequently. His neurologist increased the dosage of the medication and then added another medication, Keppra, hoping the second drug would do the trick. It didn’t.
Although his seizures didn’t stop, they seemed to be less intense. With his initial seizures, his left arm would shoot straight out and his eyes would avert in the same direction. He would also drool. His seizures morphed into a series of subtle jerks that didn’t seem like a big deal. At our next visit to the neurologist, we explained this to her. We thought this was a good sign. The look on her face, however, told me otherwise. Her face went pale and she became very concerned. My stomach dropped. That was the first time I heard the dreaded words, “Infantile Spasms.” She suspected this is what Owen had and told us she was going to admit us to the hospital the next morning for tests to confirm whether or not that was the case. I remember asking her what his prognosis was if he indeed had Infantile Spasms. She did not answer me.
I Don't Have Time for This Sh*#! 